Living with Celiac disease and other life altering allergies

Dear Woodsmom - just something to maybe be aware of: my sister has been undergoing tests for about the last 10 years for ibs, chronic fatigue, thyroid and lymes disease. She would get so stiff and her joints would ache & swell up so bad and she'd have no energy. After all these years and finally adopting first the gaps diet and then the paleo she has discovered that it's potatoes that were causing her issues. She is also lactose intolerant. However the potatoes have been the culprit all this time. She also has adoopted the wheat belly diet. I'm not saying to avoid potatoes but simply to keep that in mind. It is a member of the nightshade as everyone has mentioned and so I suppose for SOME people it can cause huge issues.

For some they find their food intolerances/allergies right off the bat. Unfortunately for others it can take a while. I really hope yours resolves fast.

And yes you're right: eikhorn (spelling?) is the true wheat.

Hmmmm - come to think of it, this just came to mind - have you been tested for thyroid issues? This is how my thyroid issue became known. I suffered for a year with horrendous allergies to the point of ending up in emergency twice with a closing throat. Hives covered my body, my eyes and lips were continuously swollen - I worked with customers face to face at that time - and I can't tell you how many of them thought I'd been beaten up. I hopped from doctor to doctor who just said to try this or that allergy pill. I finally met a doctor who told me that they were just discovering that thyroid issues resulted in allergies. He gave me Synthroid and I had immediate results. They took bloodwork and it tested fine. But it was about 6 months after that my bloodwork registered too low levels. Keep in mind that when I went back to him to ask about my weight issue he laughed at me and said, "Oh that was then, we don't think allergies and the thyroid go hand in hand anymore." (I was thinking perhaps my thyroid was the cause of my weight issue.) In any case I know what I experienced and I know it was the thyroid, they never determined exactly which name to give me but highly suspected Hashimoto's disease. So I highly recommend you ask your doctor. And know that everyone is individual - the test they compare the blood against are comparable to testing the power of a battery. They have a list they go by and if your blood comes out fine it does not mean you actually are fine. Just a little tip.

reply to post by ccseagull


Thanks for thinking of me. That is good to know about potatoes. It's strange what our bodies rebel against sometimes.
I was given the full run of blood tests for a wide range of allergies right off the bat. Luckily I am in the clear with potatoes, but my odd harsh food allergy is actually green beans. It's one of the random other things I am allergic to. They are off limits until everything else is dealt with and my doc said I can try them again in about a year.
I'm also mildly allergic to a whole laundry list of items including crab and coffee, neither of which I will ever give up.
The fact that the celiac causes more allergies explains it though.

I was also tested for adrenal function, which is low in an aspect that says its also caused by the celiac. Unfortunately that was aggravated by massive stress about 3 years ago. That seemed to trigger my downward spiral and prevented me from healing. I just zapped it. So, no I haven't been tested for thyroid issues. We talked about things and the doc seemed to rule it out in favor of my adrenals having the issues.

My throat issues are actually caused by my inhaled allergens, mainly the dog and the birch. My system is so beat that my larynx swells when it comes in contact with the allergens,causing me to lose my voice. And of course my dog is MY dog, so he follows me everywhere and stares at my all sad wondering why I don't touch him any more. I really can't escape him until I go to bed. We kicked him out of the bedroom about 2 months ago now. He cried at the door all night the first week like the over sized baby that he is. Here is picture of him in his usual position.



It amazes me sometimes how many people are superficially treated for their symptoms only and never even find out what the real base issues are. Disease will never go away unless treated at its base cause.

If anyone has a GF bread recipe that doesn't weigh ten pounds, please share!

Recipes for gluten free bread that has good reviews taste of home

reply to post by tinker9917


Thank you!
I have read hundreds of recipes over the last month. I don't think I ever checked out Taste of Home, even though I have used them in the past.

Have you tried any of these? If so which would you recommend?

reply to post by woodsmom


Also look into the Specific Carbohydrate Diet (SCD). I've have been gluten free for a few years, and although I haven't experienced symptoms to the same degree as when I was eating gluten-containing foods, I still have stomach/digestive issues.

I recently came across the SCD and I started the diet a few weeks ago.

reply to post by woodsmom


Thanks for this thread. I did a lot more research because of it, you never know everything, and even if you know a lot about something there is more to learn. HeHe, I think I solved my problem. I do not know if others will benefit from this, but in a couple of days I have seen an improvement in my ability to eat bread.

See, I was taking the mineral containing molybdenum to help with the sulfite problem so I could breath better. I also have been able to eat more foods containing nitrates but less of breads, tomatoes, potatoes, etc... I have also been eating more foods containing molybdenum. It really helps with my ability to breath and eat sugars.

There is one side effect, being that I grew up in the Copper country drinking water high in copper, so did my father and grandfather, but my grandfather did come from Finland when he was about 18, coming from another copper mining town. Seems that this long history made some changes to our genes, I have a lower body temperature, usually around 97. It can go down to 93 when working outside in the winter, I get a little cold but it works well living in the north. It also keeps me cool in the heat having this lower temperature.

Now I come to the problems with this change. I need more molybdenum to detox things because I have reduced enzyme action because of the lower body temperature. When I am working hard, no problem, I heat up inside. I suppose I could do more of what my ancestors did, take saunas twice a week and I could process these things better. My daughter eats ginger, it also raises the liver temp as does cinnamon...another finnish treat, cinnamon toast would work. So I take molybdenum and eat more nuts and even some whole grains to get this. One problem, the pill only has half the daily supply of copper. Copper is needed for tyraminase to work, molybdenum also chelates copper out of the body. Glutamine is in breads and tomatoes, it actually stimulates inflamation in the gut which causes it to heal better. So what if this stimulation goes wild by eating too many glutamines without enough of the enzyme to get rid of the glutamines. It starts to inflame the guts too much, a condition that could be one of the symptoms for gluten intolerance.

By lowering the enzyme though, it allows more glutamates and glutamates are necessary for forming memories and also for forming antigens. So it created a problem with excessive antigens but also let me learn easier. I guess you can't have both sometimes. Chocolates have copper, and they say that if you do something wrong to give your wife chocolate so she won't remember that you screwed up. I think maybe society eats a little too much chocolate myself, but it does make us civil. We can't seem to learn from our mistakes though.

So two copper pills yesterday with my mineral pill, and a copper pill with my multimineral today and I am able to tolerate bread now. Hardly any inflammation, the tyramines are being broken down by the copper enzyme now that they have their copper. No problem, I just have to learn to balance the two properly to get the best energy and still be able to make memories.

I come from an area high in copper in the water, this breaks down tyramines and causes anxiety and depression in people unless they boost their tyramine consumption. No wonder so many people drink beer up there, it is a medicine for them to keep them from becoming depressed. There is also a sausage company there, aged meats contain tyramines. So they start telling people not to eat the sausage and people need antidepressants or start drinking more, eating more peanuts would take care of the nitrosamines better.

I'll keep eating my smoked fish and pickled herrings, I'll keep eating my Italian sausages and take a molybdenum pill. I am no longer drinking the copper water though so now I have to supplement more copper....too much and I might have to start drinking some of that aged brew again. I can even drink pabst with it's high sulfites that gave me an instant headache, as long as I eat some peanuts or pop an extra molybdenum pill.

Now, since I have been eating more sulfur foods and also more nitrogen containing foods I have had another few problems. By bringing up the NAC production in the food, since I do not wish to eat raw meats, I have raised the tyrosine levels. So now I pee more and pee out all the salt. It also increased my ability to make insulin, so when I drink juice or alcohol, two hours later I wind up with the hypoglycemic spins. I talked to the pharmacist when I was looking at ketone test strips and she told me to eat less carbs and more proteins. It actually works great, no highs and lows now. So I need to eat adequate salt or I run low on salts, peeing them out. Tyrosine can stimulate the kidneys to make you go and particularly reduces salts. Boy, can you get some complications that need addressing just by changing diet and trying to rejuvinate the cells in the body. I have come a long way from almost loosing my feet from taking medicines that I was intolerant to for five years. Now I know never to take pills that mess with enzymes. I would rather adjust the diet a tad bit. Even adjusting the diet over an extended time can have negative effects just like the meds did. Controlling epilepsy means I have to use the same basic chemistry as the meds, it is no different. I am correcting for the same side effects as the medicines had, but some foods automatically do this. Medicines work by taking a desired chemistry out of the food or herbs and concentrate it. Sometimes the chemistry needs companion chemistry though, so doctors may prescribe another medicine if you don't crave the companion chemistry in dietary changes. Our cravings are important. It is better to adjust diet a bit than to take minerals or vitamins. The B vitamins added to breads may not be such a good idea either, I think enriched white flour is not good for a lot of people.

reply to post by rickymouse


That's precisely why I thought I would share. I'm glad I could help, and I really appreciate all of the info that you have added to the discussion. It gives me a lot to research.

I'm really glad that you are feeling better and this led you to finding some more info. You aren't joking about the chocolate either, I know I'm a happier person with a little in my life. It's interesting to find out why. Now if only I could still have a real beer......

I did ask my doc about adding the multi vitamin and he said go ahead if I want, but he prefers to individualize for each patient. I'm going to stick with his orders at the moment, but adding the multi might be happening sooner than later if I can't get this reactivity to chill out a bit. I'm still blaming the dog.

I have yet to try the potatoes as well, maybe we will have baked potatoes for dinner tonight and I will see if there is any difference. It was homemade sushi last night for our anniversary. I feel like crud again today, but I seem to for a couple of days after my iron/ B12 shot. Be well rickymouse!


To Davo163, thanks! It gives me something else to check out, and it's good to know that it's working for someone.

How did the baked potato make you feel.

Potatoes also contain an inhibitor of Acetylcholinase, an enzyme that breaks down acytylcholine which is a neurochemical that fires up cells and brain cells. acetylcholine and nicotine do the same kind of thing. I don't think the potato inhibitor slows the breakdown of nicotine though. A potato also contains nicotinic acid which also stimulated thinking and exitation of cells. Constant stimulation of the cells without anything to relax them can cause a little inflamation. The relaxing can be accomplished sometimes by more magnesium I have read. Calcium and magnesium are almost opposites. Calcium stimulates and magnesium relaxes. So what I am saying is that maybe adding a little more magnesium foods to your diet may solve some of your problems. The only way to know is to try I suppose.

I do take a magnesium supplement about twice a week if I feel a certain way and also use epsom salts to take a shower with before washing with the soap. If my heart seems to beat a little weird, the magnesium helps it. I don't think there is much magnesium in white flour, there is a lot of calcium though. I have to try to add something with magnesium to the bread, like some crushed sunflower seeds or something. They also contain copper in reasonable amounts to help reduce inflamation and breakdown of the glutamine and glutamates produced by the body.

This probably won't help you with consuming gluten though, you probably have built up antigens against the gluten once you have progressed to Celiac. Black pepper can stimulate the stomach to heal if you can't use glutamines. Taking a rest before trying to start repairing the gut may be necessary though.

woodsmom
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.

www.alternativementalhealth.com...


www.abovetopsecret.com...

I can appreciate your dilemma....

I have the same problem....

Unfortunately your health will continue to deteriorate if you cannot remove the triggers....

Bear in mind that likely ALL of your physical, mental, and emotional problems stem from your allergy/sensitivity reactions....

The Liposomal Vitamin C protocol will help but is NOT a Silver Bullet....

Search my username Tarasco in the Lip C link to see how I am faring....

The Liposomal Vit C protocol will help but little if you don't deal with the reality of your situation....

I highly recommend you take lots of this stuff but you must think seriously about changing your environment if you wish to survive....

Denial is understandable but ultimately dangerous....

Good luck and hang in there,
Tarasco

edit on 13-1-2014 by woodsmom because: Typo

reply to post by rickymouse


I actually ended up stopping one of the medicines called NAC too soon. It's a detoxifier that works great on my system. I picked up some more from the doc and the heavy reactivity has subsided again. It is N-Acetyl L-Cystine and helps to promote glutathione production. I'm honestly not entirely sure why this one works, but it does. It seems to be what is helping to support my system during some of the healing process. My reaction to the dog has been almost negated again and my sinuses are clear. I still get hives if I love on him and don't wash my hands fast enough, but the regular bathing of him and steam cleaning in my house is really helping. I will give the baked potatoes another go for medicinal purposes after I get a bit more under control. I'm going to need all the help i can get when the birch starts to drop it's lovely blanket of yellow pollen on the world.

Thank for the magnesium info, I will look into that some more. As far as my diet goes, it's gluten free for life. It's the only thing that will work for the celiac. I'm beginning to think that cutting out most grains as someone mentioned might be a good route to take for a bit too. Although I did make a gluten free passion fruit cake that came out pretty good.

reply to post by Tarasco


Thank you for your kind words.

I do need to look into the liposomal vitamin c some more. I read though the big thread a long time ago and never revisited it. Thanks for the reminder. I have been taking a good vitamin c supplement anyway to facilitate the absorption of my iron anyway. I have also been taking a complete B vitamin complex for a couple of years already to help with the fatigue. That has just been kept on with the new regimen.

Thanks for the link too! My mood has already greatly improved since changing our diet. I will be gluten free for life. It is simply a matter of changing old habits and relearning how to cook. The gluten has been eliminated completely already, with the exception of some cross contamination a couple of times.

The other environmental factors are the hard part. We seem to be getting the dog dander under control, but I just don't know what to do about the birch. As I have mentioned, moving is out of the question. We are where we belong in this life. It's just too bad that it's in an old growth birch forest.

reply to post by woodsmom


I have been having good luck with the copper pill. I don't get as much bloating when I eat breads. This is about my fifth day, I take the copper in the morning and the multimineral at night. Along with the copper in the copper country is also molybdenum in the water I think. When I moved, these two minerals disappeared from my diet. Our well water does not have the same taste as the well water in Boston location in the copper country. When my parents were up there, I used to go and help them, drinking a lot of water from thirst. It really tastes good to me. I have a low body temperature and also the copper changes my eye color. the color kind of gets a little browner, they are actually green. This is a sign of Wilsons, they have started to get rings around them since I started taking the copper already, but they are dark colored rings now. The color is more hazelish now. I guess I need to find a happy medium with this, balancing glutamine consumption with the copper. I have slowly gotten rid of the buildup of copper in the body in the last five years, but I think I just went a little too far. The copper needed for some necessary functions got too low, but at the same time what I have been doing has increased my ability to think clearer. So health or intellect, which do I choose. Maybe I will go half way between. I do not want to feel sick when I eat tomatoes, breads, pasta, and beer either. I do not really want to drink beer anymore anyway but having a couple on occasion is a nice option without having to worry about a bloated stomach. A lot of things contain glutamines, not just bread. Even potatoes contain them but potatoes don't effect me nearly as much as the breads do.

I actually have the best of both worlds right now, if I can figure out a good balance I should be fine. I can breath well without a reaction to the cats and still eat bread and pasta. I am not going to push the bread thing though, they will make me gain weight.

Copper is needed for the monoamine oxidase enzyme. Molybdenum is needed to break down nitrites, sulfites, and xanthian. The last three were giving me problems before, but I just wasn't getting enough copper seperately to go along with this, and I had boosted my sulfur foods to deal with the epilepsy. I have six or seven ways to combat the epilepsy, I will lean on a different method more. Sulfur and molybdenum together chelate copper and a few other metals out of the body quickly...well, it takes six months. So maybe I can just start over.....oh oh, can't do that I keep forgetting about the epilepsy.

reply to post by rickymouse


I'm glad that you seem to be having some relief! Good luck on finding the balance that your system needs, finding a balance seems to be the hard part more often than not.

I'm glad that you can still eat bread, it's not the best for us but its so hard to eliminate completely. I will post a new thread when I get all of that figured out. It may be awhile. I have found some beer though that is gluten free. It's called Omission ale and its made by Widmer brewing company. I have tried a few others that are all right, and don't bother with redbridge if you like a good beer. Angry Orchard hard cider is also a good substitute. I have always enjoyed a good beer. I think that I mourned that and Chinese food the most. I have found a beer that tastes like a beer, now I just need an amazing Chinese chef to show up on my doorstep and train me fully and I would be happy.

I was diagnosed with Celiac disease in 1996. Its not just allergy, it means huge changes. You have to be really careful what you eat, the diet is expensive (Though you get 23,60 €/month as compensation here, it isn't enough). Sometimes it has serious effects to your teeth. Studies have shown that dental problems are very common on Celiac disease sufferers (70%-80% have dental problems). Sometimes it has huge impact on teeth enamel, making teeth discolored, rough, in some cases entire tooth can be irregular in shape. It doesn't matter do you follow the diet, you get these problems even with correct food.

I'm just 24, but getting dentures because of celiac disease.

reply to post by Thebel


Celiac is not allergy at all its an autoimmune disease. Should not been mixed.

I wonder where you are from i have few good glutein free bread recipes to make country style bread which is good, just wondering if you have all the ingredients which is needed.

My kid got celiac disease when he was 3 years old and hubby was diagnosed 6 months after kid. We decided to make our house totally glutein free for all of us ( which included me as non celiac ) i mean everything had to be replaced and so much food was "throwed away " it was actually shocking to see how many products did have glutein.

reply to post by Tarasco


You are right. I am still having so many difficulties breathing, that today is the day that my dog gets a new home. No matter what we have done, all of the extra work, still has not helped the problem. Actually it is quickly getting worse.
It has been a very difficult decision, and a few very rough days around here, but he is going to go live with a friend.

I am getting worried about pollen season at this rate, but we will cross that bridge when it comes.

reply to post by Thebel


Thanks for your input! I had no idea about the teeth, luckily mine are fine, but I will take extra care of them now.
It still amazes me the things our systems will do to compensate for other issues, I'm still ironing mine out. I also learned the very hard way recently that the only place that it is safe for me to eat is at home. I got sick from one of two things that friends of ours made for a get together, even though they were made specifically gluten free. I think I am figuring out the expense part, it is taking some juggling though. Luckily we recently got to stop buying diapers and wipes, and now we get to stop buying dog food, so that adds up to about $150 a month to add into the food budget, which almost covers it.

One website that has been recommended to me,though I haven't used it yet, is vitacost.com. They have a wealth of discounted health foods and supplements available. Maybe it can help you out!

ETA: I just realized this may help you too, one of the problems with this is not being able to properly absorb our nutrients. I was given an enzyme last week by my doctor because of other issues that were not resolving, some got worse actually. Well the one he gave me was processed in a wheat facility so I can't take that one. I did my research and found that some issues are caused by not enough acid in our guts to process our food. I have been drinking an apple cider vinegar ( with the mother) drink that can be found on the back of the bottle and taking papaya enzyme to help support my gut. Surprisingly enough, I have lost close to 3 inches of bloat in a week. It seemed to be the catalyst to support things properly. Maybe it will enable your system to absorb what you are needing. Good luck!

reply to post by dollukka


Thank you Dolluka!!

I would love the recipe! I probably have close to a dozen different flours in my house at the moment and have the ability to order or find whatever else I may need. I came across a super simple coconut biscuit recipe yesterday that I was going to try out today. While I am finding good meals to feed my family, I am still wondering how I will feed everyone when we are on the go away from the house most of the summer. A good bread recipe will solve many of those issues.

It's good of you to take such good care of your family. It would be even more difficult to not have total family support in this venture. I am also lucky that my husband has also committed to a gluten free life with me.

Thebel
I was diagnosed with Celiac disease in 1996. Its not just allergy, it means huge changes. You have to be really careful what you eat, the diet is expensive (Though you get 23,60 €/month as compensation here, it isn't enough). Sometimes it has serious effects to your teeth. Studies have shown that dental problems are very common on Celiac disease sufferers (70%-80% have dental problems). Sometimes it has huge impact on teeth enamel, making teeth discolored, rough, in some cases entire tooth can be irregular in shape. It doesn't matter do you follow the diet, you get these problems even with correct food.

I'm just 24, but getting dentures because of celiac disease.

You get compensation for they diet? I wish they did that in the U.S. For a while I lived solely on meat, dairy, fruits and veggies because I couldn't afford the replacement grains.

I hear you on the teeth. I am not as bad as you, but I have problems, and I don't have dental insurance so I am pretty much screwed, on top of the fact that aside from my front 8 teeth on the top and bottom, I never had had adult teeth form. So I am 30 something years old with baby teeth.

reply to post by calstorm


You can be reimbursed in the US too.
You just have to show the price difference between the gluten free food versus regular food and then write off the difference on your taxes. It seems like a lot of extra homework, but it might be worth looking into.