Living with Celiac disease and other life altering allergies

After years of building health issues, I finally got some answers about a month ago. I was diagnosed with Celiac disease through blood tests.

Celiac

I was also diagnosed at the same time with several other allergies, the two most severe being birch and dog. I won't even touch on the rest of them as their effect is only minor. The allergies to my dog and the birch are directly affecting the quality of life in my household, not to mention the complete diet change due to the celiac.
I was also found to be severely anemic and having malfunctioning adrenal glands. I am currently undergoing several different treatments for all of the problems.

My reasons for posting this are to bring awareness to Celiac disease and severe allergies, as well as the fact that I seem to have hit a wall. My system was essentially in the process of shutting itself down. Things had progressed so far that I was becoming malnourished to the point of the anemia being so severe that I need weekly shots for months as well as the pile of daily supplements.

A permanent change of diet is the only treatment for celiac. A diet without even a trace of gluten. Gluten is a protein found in wheat, rye and barley, as well as many other products such as oats that are cross contaminated along the trip from field to home. A person with celiac is not only unable to digest these proteins, but they actually destroy the villi in the intestines so that a person is unable to absorb much of anything at all at a point.

The symptoms are vague and easily blown off or attributed to something else. Fatigue, joint pain, irritability, abdominal bloating and pain, weakness, depression and headaches are only a handful of symptoms related to the disease. I personally have had many of theses symptoms on and off for years and years, but I was always able to explain them away. For instance, the joint aches must be from old snowboarding and horseback riding accidents. The weakness and fatigue must be from a long week taking care of my home and family. Even the shortness of breath I was having was from the anemia, I just knew it was because I had been smoking for 15 years, though I did quit because of it, so it's not too bad right.

Celiac is often a genetic disease. It can be diagnosed with a simple blood test, it is often reconfirmed with more invasive methods, but the blood testing is getting better making a biopsy often unnecessary. It runs strongly in a family and may be worth being tested for if a person has symptoms and a family member with it.

A change in diet has meant a complete purging of most gluten products from my home, the only exceptions being a few treats for my boys when mama's not around, which isn't often. We gave away enough food to feed several families and helped stock our local food bank right before Christmas, and that helped immensely. It was a cleansing deed that helped a lot. We have been slowly building some appropriate foods back up in the house and I am having to relearn how to cook. Ironically enough my husband got me a bread maker for Christmas before we even knew what the problem was. That has been a lifesaver. It also highlighted that fact that I need to start reoutfitting my kitchen from scratch. I finally got a new toaster oven this past weekend, my old one is off limits after it cross contaminated my toast and made me sick. It is serious enough that I literally cannot have a crumb contaminate my food, and now that I have eliminated the gluten from my diet, I seem to react to the slightest amount.

Thank goodness for a freezer full of fish and another full of berries. I am still searching for a decent gluten free bread recipe though, my son is refusing to eat any bread at the moment because of a couple of failed attempts. Gluten free bread tends to work better as a door stop, though that is a food science issue that I am sure I will eventually overcome. If anyone has a GF bread recipe that doesn't weigh ten pounds, please share!

Some days I feel at my wits end and some days I feel 100% better than I have in years. Here is where it gets hard though. Two of my other four major allergies just happen to be to my beloved beast of a dog, and to birch. I live in a birch forest, I burn birch wood in my wood stove to heat my home, I have mulched my flower gardens with decomposed birch wood from the woods surrounding my house. We spend the first half of our summer hauling and splitting and stacking cords upon cords of birch wood for the coming winters, only the gardens take up more energy in the summer months. I'm sure some will suggest moving, but that is absolutely not an option as I would have to leave Alaska entirely or move so far north that they won't grow anymore. Neither is a viable option. We have finally found our dream home and have been building and improving it for over 8 years. I refuse to leave. We are relying on our gas heat at the moment, rather than the wood stove.

I also stubbornly refuse to get rid of the dog. He is truly part of the family and fits us perfectly, except that I'm so allergic. It has gotten to the point that I can't be anywhere in my home without itching and sneezing severely, except my bedroom. I also homeschool and have two young boys at home, so hiding in my room is obviously out of the question. I feel terrible about this because it now falls on my husband's shoulders to keep the house as clean of allergens as possible. I'm not supposed to stir it up,and he already works so hard to take care of us that I hate asking him to do so much more. He's always been willing to help around the house, but this is putting a fair bulk of my chores on his shoulders. It's not fair and I just really don't know what to do.

This is taking a huge emotional and financial toll on my entire family. I know I sound like a huge whiner. I am just at my wits end. One friend actually told me to " relax, it's only temporary" but it's not. The diet in particular is a lifelong fix to the problem. There are hopes that in time some of the other issues fade into the background when my system is healthy, we will wait and see.

People should be aware that this is no fad diet, it is a serious health condition for many people. I can handle relearning how to cook, I don't know if I can handle the loss of the few friends that I have over it. We had to cancel our New Year's Eve plans because of it, and I still have not heard back from that friend. Please don't take offense over others illnesses. I would never expect a friend or even family member to change their anything in their life to accommodate this, but I should be able to still count on them as a friend in a difficult time. I am exceedingly grateful that my husband has willingly joined me in the fight. Support is all anyone can ask for under the circumstances. If you can be that for somebody, please do. It amazing how little things make a huge difference in people's lives.

Thank you for taking the time to read through this. If it needs to be moved to rants, I understand. I just needed to get it off my chest. It's very frustrating to have your life flipped upside down.

I am having a few problems with something like this, but it is not really bad....yet. I need to read this later so I figured I'd comment so I have a reminder. I have a lot to learn about this yet, other than the options and treatments they say are available. I think it is a combination of a couple of things in some cases.

Thanks for sharing your story. I can't say that I have been diagnosed with celiac disease, but I have completely gotten rid of all gluten in my diet as a way to lose weight. I do cheat very occasionally (after all, our entire western diet is very grain based and that stuff is in EVERYTHING), but for the most part, I do feel much better.

I also have a lot of allergies, and they seem to get more numerous and worse as each year goes by.

I was buying gluten free bread from the Julian Bakery in La Jolla, CA (made from coconut flour), but it was expensive and it tasted kind of like cardboard. It was good with cream cheese on it, though, but there are so many gluten free options out there that you can make yourself and is infinitely cheaper. I've made yummy gluten free cookies with egg whites, etc. I also cut out sugar so I end up with a pretty boring diet.

However, it has eliminated a lot of my fibromyalgia, joint pain, fatigue, and that annoying bloating in the gut.

Basically, I eat meat, eggs, cheese, veggies, and have some cream and stevia in my coffee. For a treat, I'll have a bit of marscapone cheese (kind of like cream cheese but sweeter) and add stevia. Yeah, it's boring, and my ability to go out to eat and not break my diet is non-existant, but I feel so much better.

I have developed an allergy to my cats (I have 10 rescues). Am I going to get rid of them? NO. I deal with it. I am very allergic to grasses, and I live in a field full of prairie grass. I'm not moving either. Some things, you can take medicine for.

Good luck in your lifestyle change.

reply to post by FissionSurplus


I have discovered that it is decidedly cheaper to make my own grain based foods. I splurged on a couple of bagels and immediately regretted it, most of the store bought products are not very good. I do know how to cook from scratch, it seems to be a matter of the science of the different ingredients. Every loaf I make is a bit more palatable, and I am acquiring quite a stash of scraps in the freezer to make croutons and breadcrumbs with.

You are right too, gluten is in many many things, things aside from whole fresh foods. We eat a lot more salads, I can't wait for the gardens to wake back up.

The puppy stays too. You obviously understand that one.

I really appreciate it. It is just incredibly frustrating some days, today being one of them.

reply to post by rickymouse


I look forward to whatever wisdom you come across on the subject.
The diet part is frustrating, but if you happen to know of any whole foods that help with allergies, I'm all ears!

Have you heard of Danielle Walker? She is a young woman who almost died from her autoimmune disease. She found the "Paleo" way of eating, and it apparently saved her life. Anyway, she has a cookbook and a website with some delicious recipes, including a really good gluten-free, grain-free, dairy-free, sugar-free bread recipe. It uses cashew butter and coconut flour, instead of wheat or rice flour.

I do not have a gluten allergy, but I am trying to follow more the Paleo way of eating, because I think it's pretty healthy. I believe we weren't designed to eat all the grains we do, plus today's wheat is a "frankenwheat" version, compared to our great-grandparents' wheat.

My ex-gf has celiacs. definitely something you can live with. Knowing nothing about it myself she told me gluten is in so many things. She had concerns with taco seasoning packs.

I know there are a lot more sites to get gluten free foods now, bread and pizza dough mixes im sure. many restaurants have a gluten free menu if you ask. I actually thought of her today when I saw gluten free english muffins in the store.

Used to travel about 50 miles to a gluten free pizza joint. Was interesting talking to other customers and how far they had driven and how bad they wanted pizza.

reply to post by kaylaluv


Thank you, I haven't, but it's yet another place to look!
There are definitely a lot of resources out there, I have barely scratched the surface and am willing to read as much as I need to. A great blog that I have found is Allergy Free in Alaska, it's helpful too because she lists where to find many of the resources in state. Another one that I have found is Gluten is my Bitch, seriously, she's a bit crude, but really puts a hilarious spin on the reality of the situation.

It's also amazing how much better I feel in general. I have even lost some weight already too, and that's always a bonus. Good luck on your paleo diet, my sister actually started that last summer. She loves it! Almond flour and bean flours are also good substitutes for wheat, especially with the paleo diet.

reply to post by tinner07


Haha! We have actually discussed a trip to Anchorage, about 150 miles away, and making sure we get pizza! There are also some natural food stores I want to visit, and we will be taking the boys the museum when we go, but the pizza is close to the top of the list!

reply to post by woodsmom

Thank you for sharing your story, it does sound like you are starting to do the right things. I'm a firm believer that diet will be a huge factor for you and though I don't know much at all really as I've just started looking into Raw Foods myself, but the personal stories/blogs seem promising for others who share your situation who have switched to 100% Raw Foods. Perhaps it would be something to look into and incorporate as your lifestyle allows? Cheers

reply to post by LadySkadi


You might want to try something called manna bread if you can find it. I used to eat it when I lived in Hawaii. It's a sprouted raw bread, and it's so yummy.

Raw foods are great, and we do eat a fair amount. It's frozen here for about 8 months of the year and most of our foods are shipped up here. That makes it prohibitively expensive to feed a family that way. I have fun trying to balance health and budget, and this has really pushed the equation to the health side. Completely raw is probably out of my reach.

Dear Woodsmom - great post. I recommend anyone interested to read Wheat Belly.

My story: gaining weight all my life, never being able to lose it. I tried every diet, giving adequate time for results. I have tried walking for 3 hours a day on a strict diet, the Canada Health Food guide, on crash diets - nothing worked. I have been to two doctors one of which told me I am not exercising enough, and eating too much; the other who said that as women age they gain weight and it's harder to lose. I even met with a nutritionist as well as a homeopathic doctor. I watch what I eat, do the food portions, eat less than other skinny family members and it has never made any sense. And the bizarre thing is that losing every meal I had just eaten mere moments prior and this kind of response carrying on week after week after week you would think that the weight would start melting off. Nope. But it sure kept packing on.

I had my thyroid removed two years ago due to a huge goiter so of course that was easy to blame. More on the thyroid later.

At the same time I have had endless upset stomachs all my life, sometimes for days on end. Extreme. And last year I realized I was starting to avoid social functions and not eating anything in the morning for fear I wouldn't be able to make it thru the day at work. I have always been searching for info about my stomach since the numerous doctors over the years never gave much import to the situation. I can remember sitting on the throne at 6 years old having an upset stomach. This just didn't make any sense. And then one day my aunt announced she had been tested positive for celiac and that her stomach issues had resolved. She always had the same symptoms as me. So this is where my search led.

Funny thing is that I was LIVING on bread. Due to the length and degree of the stomach issue I would eat bread THINKING it would settle my stomach. Plain bread should do that right? And it was the worst thing I could have possibly done. And then thinking on it and looking back through the years - our family was heavy bread eaters: white/rye/brown/whole wheat/cornflakes/rice. When I heard my aunt's story and then started reading about gluten and stomach upsets I decided to try a test. I elminated all gluten products from my diet. Within 3 days the results were huge. No upset stomach, not even a grumble and suddenly I didn't have the mid afternoon slump and I had more energy. Kept at this and 3 months later I had lost 20 pounds without even trying!! I consider this a miracle!

Back to the thyroid issue: apparently celiac disease can cause an auto-immune attack on the thyroid. And it can cause arthritis. Interestingly enough I have been told I have osteo-arthritis in my right hip and all the cartlidge is gone. It's in both knees, in my spine, in my neck. And so I wonder at this late stage if the celiac issues caused these two issues. I have noticed now that if I have wheat I get stiff and achy, my hip and right knee start throbbing and it takes such effort to use them. I want to sleep all the time.

Reading further about celiac it also can cause allergies, possibly alzheimer's and a bunch of other health issues. I believe we have been duped into believing grains are good for us. Wheat isn't even what it was during the time of our grandparents, great-grandparents. It's a completely different engineered product, one our bodies don't recognize. Just like corn syrup - our bodies don't know what to do with this stuff and they react with inflammation, etc.

rickymouse - one of my first replies to a post was to you about not being able to lose weight. You gave some great advice and I thank you for that. I know you'll be interested in this.

Due to my new "diet" my family has practically given up breads, wheats and they can feel the results in themselves. I am 48, going on 49 and cannot believe it has taken me most of my life to find this out. And yes I even had a stomach sample taken - it didn't show anything. So keep in mind one can have the test but it may not show a result. It's best to just experiment.

I'm so sorry about the allergies. I have a houseful of pets and my pets are my family. So I can understand the dilemma about your dog - my heart goes out to you. Perhaps a special bathing solution and fur wipes(?) - only one spot for your dog to sit on when in the living room, no sleeping on your bed. Perhaps some simple changes might help.

We have to be our own research people, advocates and never stop trying to find an answer.

I have celiacs myself. It took me 10 miserable years to get diagnosed.
I has exhausted all the time, living in a constant brain fog, my muscles felt like they were on fire like they do after intense exercise just sitting there doing nothing.

One day my dr finally tested me for vitamin deficiencies after I asked. They were all dangerously low. He suggested i go gluten free for 6 weeks and then come back. In the 6 weeks I lost 40lbs and I had ENERGY!!!

By the time he took the blood test i had been gluten free long enough to get a false negative, but there was no way on earth I was ever eating gluten again.

The times that I have accidentally been glutened it is beyond obvious. I get super sick Like an insta stomach flu.
I have found that a product called gluten-ease helps after you have been exposed to gluten, but I would never take it as a method to willingly eat gluten like it is advertised.

I feel so much better in the 3 1/2 years I have been gluten free, I rarely miss most gluten containing foods.

reply to post by woodsmom


I'm trying to figure why the reaction to the gluten got so much worse once the allergen was taken away. If the body was constantly fighting it, the immune system was running drained. Another words the chemicals were being used up as they were gotten. So now there is a reserve and along with the reserve is a much more severe reaction when gluten is eaten. There are also more chemicals available for the other things that there is an allergy to now. This means all allergies are getting more pronounced. Sort of a small cykotine storm occurs. This is just a guess.

Another thing that could be going on is that there is not enough stimulation of the liver so the chemicals build up more. I'll have to work on this a bit and do some studying and thinking on it. It seems like I avoid doing research on actual problems I have. I don't want to have celiac disease because I like stuff made with flours. Life without pasty or pies would be terrible. An occasional donut is great and a good piece of cake makes me regular. I like whole grain barley and rye. To give up these things seems sad. I'm going to find a way to beat this problem. An alternative method. My problem seems to be more of a gluten intollerance, not an allergy but the same thing occurs. The glutamine causes inflamation in the intestine, something that usually stimmulates repair. But because it is overstimulating, it causes constant inflamation and the cilia are damaged. Almost the same as an allergy but not quite the same. No antigens are present. I may not have the problem that people who have the antigens do.

I have an autoimune problem, that is why I can't take the flu shot, my body attacks things. I try avoiding veggies that build my immune system, they seem to give me problems.warm. What they refer to as autoimmune disease can be treated two different ways. I prefer to keep the system kind of drained myself. If I need chemicals I usually get a craving for things. At least that isn't broken yet.

Thank you ccseagull and calstorm for sharing your stories too!
It does seem to be becoming more prevalent, I have to wonder myself if its because of the food we eat or is it that the tests are becoming better. I hope doctors are also becoming more aware of this issue because of all the other issues that it causes. Two of the most severe that I have come across are seizures and infertility as well as the others that you have mentioned.

I have also been one that has distrusted our food for a long time. I don't like the genetic modifications that have been made to our food sources. The ancient form of wheat that our ancestors used is actually Einkorn (?sp?) wheat. Curiously enough a lot of the wheat that is consumed today has actually been engineered to have a much higher protein content, and wheat protein is gluten.

I was a bit worried because one of the replacement grains for a celiac is corn, which has been heavily tampered with. However, much of the corn that I encounter is actually verified non GMO by the non GMO project. One happy side effect of shopping in the natural food section of the store more often.

Non GMO project

reply to post by rickymouse


Thank you so much! I really value your input!

What you said about the cytokine storm makes sense, it would also explain why it takes a dose of Benadryl as well as 800 mg of ibuprofen to help me get relief. Those two acting together have been my go to for quite awhile now, and that combo is the one that gives me relief. It might also explain why I was able to continue for so long before my husband dragged me to the doctor. I have run on low for years and years and been fine with it. Now I'm taking so many vitamins to boost my system, it may not know what to do with itself. It would also explain some of the heavy chested difficulty breathing that is the main reason I quit smoking. I still have the difficulty from time to time that I treat with the Benadryl ibuprofen combo. Funny enough, it was when I finally said enough is enough and started trying fix things on my own that I started going downhill even more. I was boosting my system and trying to get rid of what I thought was infection with my oregano oil and colloidal silver. I got tired of the MD's throwing antibiotics at me. I am now being treated by an ND, naturopathic doctor, and treated with herbs and vitamins. I have been seen countless times over the years for the dis separate symptoms and had only the symptoms treated. It took my new doc, who is also a certified physician, 30 seconds to figure out the anemia and the first visit to take blood and suspect the rest.

Rest easy on the baked goods my friend! If you are having these issues, be comforted by the fact that it has become more common. There are companies out there doing their part to make it possible for Celiacs and people who are gluten intolerant to enjoy a pie at the holidays or a birthday cake. My husband is a brownie fiend, and we have found at least one acceptable brownie mix by bobs red mill. That company also makes other flours in gluten free facilities so there is no cross contamination. Some flours that I have been trying are sorghum, almond, brown rice, sweet white rice, tapioca and amaranth. Thanks to a member here I actually have amaranth seed and will be attempting to make my own flour this coming season. I am also a bread and pasta addict, so I have been experimenting quite a bit. Feel free to pm me for recommendations if you want. It definitely takes some experimenting though, the textures and end results are different from what we are used to.

reply to post by woodsmom

Hi woodsmom. Well I'm sorry to hear of your problems. But I'm glad to hear that your on the mend. At least the docs know your situation now., So you can concentrate on getting better and perfecting those bread recipes!!
Hopefully things will get easier for you. And I hope the weather is being kind to you and your family

reply to post by woodsmom


I have been studying the chemicals in potatoes more lately. They contain chemicals that help my epilepsy, the solanine precisely. They also contain another chemical that can control motion sickness. The chemistry of this is utilized in motion sickness pills...but it is from the deadly nightingshade plant which is much stronger. These chemicals are stronger at the peel. There are many of these related compounds in that class of medicines, benedryl being one of them.

The problem is what you changed to that may be causing some of your problems. I have incorporated more sulfur containing foods into my diet to combat the epilepsy, the problem is that boosting the sulfur does a couple of bad things also. It creates hard breathing and more allergic responses. The multimineral I take contains molybdenum which is used in the body for a few things including the conversion of sulfites back to sulfates. Sulfur helps the body carry oxygen but it can't work if the sulfite does not turn back into sulfate to load up oxygen to the molybdopterin. So some people who think they have asthma really don't. they have a mineral deficiency, molybdenum. This mineral does not work alone though, for proper carb metabolism you need magnesium and also it is good to have some selenium. Of course this means balancing in the body with other minerals.

Sulfur actually thins the blood and it keeps your blood flowing better. It causes the clotting not to work so hot if too much is consumed. Sulfur also helps to clean the cells and body, but you need molybdenum for it to work right. If all the molybdenum is used on sulfur, xanthian oxidase and acetlaldehyde oxidase will not have enough. The same is true the other way around, if you consume too many nitrates/nitrites, than your body will not be able to detox acetylaldehyde and sulfites. There is also another enzyme that needs molybdenum directly, this other enzyme, I don't remember it's name, is crucial in fighting certain cancers. Molybdenum brings down and moderates copper, copper helps to form blood vessels. It also builds blood vessels in fast growing tumors.

The small multimineral I take has enough sodium molybate to help me breath and stops most reactions to things. I have benedryl but don't use it much. I had a few episodes where I did need it, but they were extreme circumstances. I live with cats but have an allergy to cats. It didn't bother me much when I was working sixteen hours a day, but when I got disabled and was stuck in the house more, it was effecting me. I learned a simple multimineral helped all that. I'm going to try to see what individual minerals do but this works so well, I don't even want to.

Does your vitamins have molybdenum in them? Is it chealated, chealated molybdenum doesn't usually cross into the body, working in the gut most times. Molybdenum causes chelation to occur because it boosts oxygen to the cells if you are in need. I had a little kidney problem when I started but the positive effects still outweighed the initial negative effect. Over a hundred and fifty percent RDA of this mineral is usually not needed, working slowly is better. I also learned where to find this mineral but the damage to my intestines caused by the meds I took for five years was severe. It is slowly healing, but I am intolerant to gluten now.

Look into molybdenum supplementation and try to figure how much sulfur in your foods. Reducing sulfur helps but a good sulfur supply also helps to protect us. There are always too options. You can't eat wheat germ if you have an allergy to wheat, that is high in molybdenum. Many foods have this mineral but it is bound...it can't be taken off by the body easily.

Remember that too much of this daily is no good either.

reply to post by TheDoctor46


Thanks Doc!
It's good to have answers, you can't fix something until you know where it is broke.
One of my great up days was the last time we talked, it's why I seemed so goofy, lol.

I swear I will figure out the bread. I have to before summer hits again. A peanut butter and jelly sandwich is the easiest way to feed kids on the boat and in the car. Haha, and they are all in this with me.

The weather has been great, still pretty mild. It's nice that the boys can head outside for longer than 15 minutes at a time. I can only hope that it means an early spring this year. I need my gardens back, at least I kind of know what I'm doing there and we can eat fresh again. One of my biggest heartbreaks was that I can't even eat the salmon that I spent weeks curing and smoking because I use a soy sauce based recipe. My brother and other siblings were pretty happy though. It was handy that I had to purge around Christmas, they all got a bunch of smoked salmon. I have a lot of fishing to do this coming summer too to restock my fish. Luckily the rest of my homemade canned goodies are safe.

I hope things are well with you, and that your weather isn't too icky either. Take care of yourself!

reply to post by rickymouse


Actually, I haven't been taking a multi vitamin supplement, aside from my Emergen-C to help my absorption of the iron. I have been taking so many individual vitamins that I didn't even think about adding a basic multi vitamin and mineral supplement. Thank you! I have them in the house even, I just hate taking pills of any kind so I kept it to the necessary ones. That might just help balance out the large doses of the rest.

We have been eating more potatoes since they are a safe food and two young boys will eat them. Now I have an excuse for not peeling them, hehe. I have always liked the skins anyway so I have always left them on. I know plants enough that I will dig around and see what I can come up with on that family. You might be surprised at how many plants do belong to the nightshade family, though most of them are ornamentals. There may even be a tea source among the family. I need to do some research though before I list any of them.

I really hope that you get to feel better too! I always enjoy your insight on dietary issues.