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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Unable To Maintain Gluten-free Diet
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10 posts in this topic

Hello!

I have been attempting to maintain a gluten-free diet for about a year. I found out that I had a gluten intolerance because I was diagnosed with chronic non-bacterial prostatitis. Doc had me on all kinds of antibiotics and Ibuprofen. Symptoms would go away only while taking the pills so I started to do my own investigation and learned that my prostatitis was caused by a gluten intolerance. The tip-off was beer - symptoms immediately showed up after drinking beer. So I started eliminating all gluten products and my symptoms vanished. No more weekly stomach aches, headaches, heartburn/chest-pain and no more prostatitis symptoms. I had the typical gluten symptoms since I was 8 and went to doctors for years but no one ever knew what the problem was.

Anyway.... I said the symptoms were all gone but that is only partly true. They are all gone only when I don't consume gluten and possibly soy(think I might have a problem with soy but...). However, the longest I have been able to stay gluten/soy-free is for about a week and that was when I ate nothing but rice and chicken when I first started the diet.

Since then, no matter how much I try to avoid these things, about every other day or so I end up eating something and so I have not been able to remain completely gluten/soy-free. I watch everything and use the same non-Teflon pan over and over again and no one else uses it, I have cleaned our refrigerator because vegetables were absorbing gluten particles from a bag of pancake batter. I see people who say they have been gluten-free for a long time and wondering how this is possible - it has been impossible for me. I bought Kroger orange-pineapple juice twice in 3 weeks and this gives me symptoms (conclusion: somehow there is gluten in the juice), Kroger tortilla chips bought bags which were on sale for a $1.00 and gave me symptoms although I have eaten them before and had no problems (conclusion: those chips were contaminated somehow no matter what Kroger claims - that is why they were on sale - to quickly dump the contaminated product). Even if I eat just rice, I eventually bought a bag of rice which was contaminated. If isn't in this product it is in that product - there is just no consistency - I am always left scratching my head trying to trace it back to something. It was in sensodyne toothpaste (hidden) - so there went two weeks. It was in paprika (hidden) - so there went a week. It was in whipped cream (hidden) - my worst reaction since I started, there went a week. I eliminate something and then something new fills the void.

There is just no way to completely wipe gluten out of the diet - it always turns up in something even when the label says absolutely nothing. I check everything I consume on the net before I eat it. I can't believe that these people who say they have avoided gluten for as long as a year have actually done so - It makes more sense to me that their stomach just isn't detecting the very small amounts they are eating. How are other people so easily staying away or is my stomach just more sensitive and thus detecting very small amounts of gluten? My symptoms are nowhere near as severe as they were - most of the time I eat something, it is a very mild reaction but a reaction none-the-less. I can tell how much gluten is in a product by the severity of the reaction. I fluctuate between 85% - 100% gluten free.

I eat rice, quinoa, buckwheat, eggs and chicken everyday and only rarely eat anything else. I am not allergic to any of these other things. I don't know... I want to eliminate this for good and don't know what to do.

The upside is that I have lost every inch of fat (never was over-weight but..), it took about three months. I have to be around 5% body-fat.

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Hello

First off let me say you will not get to feeling better overnight. For a few they do experience almost instant relief but for most it is a lenghty trip... I always tell my gluten-free group members that it didn't happen in a day & it will not leave in a day. Many have ups & downs often. Other factors can play into health issues ie: lack of sleep, stress, emotional status, lack of excerize to name a few. Also some foods eaten alone are fine with no problems then add another food with it at one meal & some have problems. The intestinal tract is very sensitive & most of us have abused our bodies with poor diets for a long time.

Eating or grazing instead of three large meals may help. Adding only one new gluten-free food a week is another way to see what your body is willing to tolerate. If you find it gives you a problem , stop that gluten-free food & in a week try another different gluten-free food. From what you wrote I would guess you are sensitive to many things even though you don't feel you have other allergies to foods.

I truly do not think all the gluten-free foods you mentioned were contaminated..... they just may not be agreeing with your system. Do you take enzymes & probiotics? That too may assist in your healing.

I hope you get feeling better soon....

blessings

mamaw

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thanks for your response.

I have been on the diet for 8 - 12 months (didn't just start a few weeks ago or even a few months ago) so if I was staying away completely I should not have any problems by now - like I said I am 85% - 100% healed. My reactions are much less severe because the amount of gluten I ingest is so small now. I am eating gluten on occasion accidentally without any doubt. Usually I can stay fine for a couple days. I think the only thing to do is eventually get my own refrigerator, my own oven, my own kitchen

The reason I believe those gluten-free products were contaminated is that I drank orange juice from other brands with no problem and the same with the tortilla chips with no problems. Ate some from contaminated bag yesterday -problem and same for past days from that bag, ate some from a newer bag today - no problem. Problem is in the bag.

I am not taking any supplements.

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I don't eat much "factory food" but perhaps you've got some other intolerances? I found quite a few things irritate my symptoms like: nuts, coffee, maybe soy, possibly dairy, chocolate. Lots of people find corn problematic.

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Yeah, you could be correct. I already mentioned the possibility of soy but doubt those things wouldn't explain having a reaction to Kroger orange juice when I have no problem drinking other orange juices, oranges and other acidic juices or how I reacted to two particular bags of Kroger Tortilla Chips when I just ate a brand new bag of Kroger Tortilla chips and corn in general with no problem.

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The chips might be made in a shared facility. I can eat 10 bags of Lays potato chips and be fine. But the 11th bag will make me sick. They are made in a shared facility so eating them is like Russian roulette.

Also it sounds like you are very sensitive. Some posters have said they could not be well until they made their house gluten free, down to the pet food and litter.

Have you thought of the packaging for your juice? I have no idea but some packaging could be the culprit. I'm just throwing out ideas here. Just because you have a reaction doesn't always mean it is to gluten. Like you mentioned, you suspect soy. Did your juice list any other ingrediants like natural flavoring?

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They might be made in a shared facility. I forgot to mention this above but the truth is that I have a reaction which I know is gluten - makes my stomach hurt like knives, D and acid reflux (as well as the Prostatitis symptoms). There is also another reaction which is what happens more often and comes from sources that I am "sure" there is no gluten in. This reaction involves a sharp but mild chest pain (bearable but not wanted) and sometimes causes headaches and dental pain - no painful stomach knives and D. But also causes Prostatitis symptoms. The prostatitis symptoms are directly related to bowel inflammation at the lower end. This later reaction is the one that is the most difficult to avoid - It seems to be coming from just about anything randomly. The end result of both reactions is the same which occurs the day after the consumption - soft stool and the prostatitis symptoms. There is a relation but I can't figure it out. If I can at least determine what this is about, I will be satisfied. Thanks for all your input.

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my spouse had several random incidents the first few months. He ate a very limited diet our kitchen is very simple and gluten-free and I truly doubt he was making mistakes. I think some of these occurences may be things healing up.

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thanks for your response.

I have been on the diet for 8 - 12 months (didn't just start a few weeks ago or even a few months ago) so if I was staying away completely I should not have any problems by now - like I said I am 85% - 100% healed. My reactions are much less severe because the amount of gluten I ingest is so small now. I am eating gluten on occasion accidentally without any doubt. Usually I can stay fine for a couple days. I think the only thing to do is eventually get my own refrigerator, my own oven, my own kitchen

The reason I believe those gluten-free products were contaminated is that I drank orange juice from other brands with no problem and the same with the tortilla chips with no problems. Ate some from contaminated bag yesterday -problem and same for past days from that bag, ate some from a newer bag today - no problem. Problem is in the bag.

I am not taking any supplements.

If you are sharing a kitchen with gluten eaters that could be causing you a problem. There are so many things to watch out for in that situation. So many in fact that I won't do it. Gluten particles float which could explain the problem with the juice. I can't give you tips on sharing a kitchen because I refuse to share one. I seem to always get sick. The last time I had to think about doing it I nearly had a panic attack. That's not to say it can't be done it seems like others can do it but you have to be really careful. I hope you find your answer and start feeling better.

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Thanks everyone for your continued input. I am almost certain now that this other reaction is not gluten. I believe that it is related to Oxalates. I believe that possibly gluten damages the lining of the small intestine (we know this) and that this allows oxalates to go undigested and releases the histamines just as gluten does. I have noticed that when I eat soy, sunflower oil, occasionally some berries and various beans that this indigestion/chest pain occurs. I don't know if this is just temporary until I become fully healed or if I will need to stay away from these forever but... A bit more experimenting is needed but IR really feel this is the missing link. example: enjoy life granola gives me chest pain - contains sunflower/safflower oil.

Any information on Gluten/Oxalate relations would be helpful. Thanks!

zach

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