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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 Celiac.com's FREE weekly eNewsletter   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

Newly Gluten-Free And Frustrated With Ongoing Stomach Issues
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Here's a little background. I'm hoping someone can help me put the pieces together.

I'm 31 yrs old, Female, and have Endometriosis and Hashimotos Thyroiditis. I also suffered from infertility for 3 years before conceiving my daughter via IVF.

I was just diagnosed with the thyroid disease earlier this year.

I've always had stomach issues - but there were periods of time where I didn't have any problems at all. While I was pregnant I never had problems with upset stomach.

After the birth of my daughter I started having skin issues (constant itching) insane bloating and my stomach problems returned. My Endocrinologist suggested going Gluten Free to see if that would help my problems. She never did any blood tests that I'm reading about on this forum.

I've been Gluten Free since September 27th. I've been very strict and have tried my very best to avoid cross contamination problems or "iffy" foods. Believe it or not, my stomach issues have gotten WORSE since eliminating gluten! What gives? I'm so disheartened and frustrated right now.

Is it common to have stomach troubles 3 weeks into a gluten-free diet? Is it possible my body has started detoxing all of the gluten and this is why I'm having problems? The first 2 weeks I didn't have trouble at all, but this week has been hell.

Any thoughts or suggestions are so greatly appreciated.

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It may depend on what you have. I've heard those with gluten intolerance may feel better right away but those with celiac disease can take much longer. Some celiacs feel better right away but others take months or even years. It is unfortunate that your doctor did not do a celiac blood test before advising you to try going gluten free. I say that because if you have the test after having been gluten free you could end up with a false negative test. It may help to know for sure if you had that or not. You could go back to eating gluten and try the celiac test after you've been consuming for awhile (others may be able to advise how long). I'm sure that would be frustrating to have to do though.

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Here's a little background. I'm hoping someone can help me put the pieces together.

I'm 31 yrs old, Female, and have Endometriosis and Hashimotos Thyroiditis. I also suffered from infertility for 3 years before conceiving my daughter via IVF.

I was just diagnosed with the thyroid disease earlier this year.

I've always had stomach issues - but there were periods of time where I didn't have any problems at all. While I was pregnant I never had problems with upset stomach.

After the birth of my daughter I started having skin issues (constant itching) insane bloating and my stomach problems returned. My Endocrinologist suggested going Gluten Free to see if that would help my problems. She never did any blood tests that I'm reading about on this forum.

I've been Gluten Free since September 27th. I've been very strict and have tried my very best to avoid cross contamination problems or "iffy" foods. Believe it or not, my stomach issues have gotten WORSE since eliminating gluten! What gives? I'm so disheartened and frustrated right now.

Is it common to have stomach troubles 3 weeks into a gluten-free diet? Is it possible my body has started detoxing all of the gluten and this is why I'm having problems? The first 2 weeks I didn't have trouble at all, but this week has been hell.

Any thoughts or suggestions are so greatly appreciated.

Hello and Welcome!

I would suggest you give up dairy along with gluten for three weeks and see if you improve. Often time, when some healing takes place, dairy can be reintroduced successfully.

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There could be other foods that you are sensitive to. I found after stopping eating gluten that all my symptoms were magnified, perhaps because the glupey gluten wasn't lining my intestine any more and started to let every protein and particle through in to my blood. My itching got MUCH worse before it got better. Like you most of my symptoms in my first pregnancy were much reduced, but the second one found me getting cholestasis - which is also something that Celiacs can get.

I've been on this diet now about 10.5 weeks and have only recently started to feel better. I did quite a tough bowel cleanse using herbs, anti-parasitics, anti-candidas, taking aloe vera and L-glutamine to try and start building up the intestinal wall and went for a session of acupuncture. I also cut my diet down completely to what I consider clean food - so just meat and vegetables, olive oil, salt and garlic. I still don't eat dairy (I get headaches and phlegm when I do) and I don't eat tomato or aubergine. After a week or so like this I really started to feel better. There are still down days but on the whole my brain fog is 80-90% improved, stomach issues about 70% and general overall well being 80%.

Hope that you manage to keep going and find out what is making you feel so bad. 3.5 weeks is not long and it does tend, from the posters on here, to get worse before it gets better.

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Well, the one sort of bright spot? If you're noticing a difference, it likely means that gluten is related to the problem in some way, at least! :-)

I got worse on my gluten-free diet, too, although I was diagnosed. I know there is gluten withdrawal, yes, but I don't know if it involves gut issues like this, honestly. I've heard more of general malaise, flu-like symptoms, brain fog , that sort of thing. But that doesn't mean it doesn't happen.

Some of my problems that might relate, were the following:

1. I had mild, undiagnosed food allergies. These don't give me hives, but rather inflame my gastro track and give me lots of stomach issues. Mine definitely followed that pattern of 'no trouble on gluten' and then it's like my body suddenly had the resources to attack the evil allergens and set to with a vengeance! I ended up doing a food journal and was able to track some of my reactions with some of the worst tummy trouble. I was also tested for allergies. The tests aren't always reliable, and the blood tests are better than prick ones, for mild allergies that affect the gut primarily (according to my allergist, anyway), but they can be a starting point.

2. Also, re: the allergies? It turns out my allergies involve ingredients that are MORE prevalent in gluten-free foods. So I was getting more of my allergen in the gluten-free diet than I would have before and getting sicker from them.

3. I do know that gastro reactions to the gums used in many gluten-free foods is not uncommon, xanthan gum especially. Have you added any product with that into your diet in this last week, by any chance? There's some other additives, like the natural dye 'annatto,' that are likely suspects for gastro issues, too. Again, a food journal is helpful in tracking these kind down.

4. The dairy issue was one that hit me, too, as well as my daughter. We are both lactose intolerant when we are healing after getting glutened.

Some questions, too:

Has anything changed in your diet in this last bad week? A new food, or product, or you've been eating more of one food than usual? Or a new bottle of something? If a product is a 'no gluten ingredients' food rather than a gluten-free one from a good company that tests, gluten cc can sometimes occur, so if you introduced a new product, that might be a suspect.

Can any gluten eaters in the house possibly have accidentally cc'd any of your condiments or spreads by double dipping with the knife, by any chance?

Hope that you are feeling better soon!

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Thank you all so much for you input. I really appreciate it! To answer the questions posed above, the only new food that I introduced into my diet since eliminating Gluten is Kind Bars. I've been eating one a day to give me a repeive from missing my beloved cookies. That's really the only new thing I can think of.

Outside of the Kind bars, I will readily admit that I'm terrified that dairy is my underlying issue here. I very much dislike the taste of soy and almond milks, and I do think my dairy intake has upped to overcompensate for my gluten elimination. I suppose the only way to know for sure is to eliminate the dairy (nooooooo!!!!!!!!!!) and see what happens.

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Thank you all so much for you input. I really appreciate it! To answer the questions posed above, the only new food that I introduced into my diet since eliminating Gluten is Kind Bars. I've been eating one a day to give me a repeive from missing my beloved cookies. That's really the only new thing I can think of.

Outside of the Kind bars, I will readily admit that I'm terrified that dairy is my underlying issue here. I very much dislike the taste of soy and almond milks, and I do think my dairy intake has upped to overcompensate for my gluten elimination. I suppose the only way to know for sure is to eliminate the dairy (nooooooo!!!!!!!!!!) and see what happens.

You could try lactosefree milk, or rice milk. Rice milk takes a bit of getting used to but eventually as it doesn't cause symptoms it becomes the lesser of two evils :)

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Instead of guessing, the best approach is to find a great GI doc and get tested for celiac. This way, your not shooting in the dark. Just be sure to go back on gluten for a few weeks before getting tested.

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Hello! I am newly gluten free (almost six weeks now) and I feel better...and worse all at the same time. I have suspected that I had some kind of gluten intolerance for some time now because I felt absolutely awful after I finished any meal. I also would itch like crazy anytime I drank beer or ate a lot of bread. I had serious brain fog and was achy all of the time. I had a blood test (celiac panel) done in the summer which came back negative. Since I felt like there was still something wrong, I decided to go gluten free on my own just to see if I felt better.

 

Well, so far the brain fog has lifted. I feel like I can think clearer than I have been able to in years. I can concentrate. I feel lighter, less bogged down. I don't ache in my feet or knees or hands. I have more energy and my skin has started to clear up a bit. I'm also not itching as much.

 

THE PROBLEM: I am having terrible stomach issues. I can't tell if it's becasue I am eating more dairy and meat than usual or what. I spend a good chunk of the morning in the bathroom (trying to be discreet here) and a lot of gluten-free folks I know have mentioned cutting out dairy as well. I am also going to start taking L-Glutamine and Bifido/Bifidus Bacteria supplements. I have been told those work really well for newly gluten-free folks. I am also still having heartburn/acid reflux.

 

This thread has been really helpful so far! I unfortunately don't have insurance right now so I can't get checked out, but would really like to do something to keep myself healthy in the meantime. I am trying to cut down to just clean foods as well. Veggies, potatoes, and chicken. I do think I must have some kind of sensitivity to gluten if I feel better mentally than I have in ages, but I wonder what else might be causing problems. I should add that I am still drinking coffee. Is it a good idea to cut that out as well?

 

Any advice anyone can contribute would be appreciated!

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There's basically 2 ways to find out what foods bother you. 1) remove 1 food at a time, for a period of time, see if it helps, and reintroduce it again or 2) Stop eating everything and anything that you are suspicious of and then add them back 1 at a time.

 

I would suggest nixing caffeine intake if you feel it's causing you issues. But you'll also probably have a harder time sticking to your new diet if you just stop everything all at once. And maybe coffee's fine for you anyways, it's not like lactose in dairy where you know a damaged gut won't break down the lactose, or even the protein in dairy which has had a spare number of papers where it shows it may interact negatively in some celiacs. But caffeine speeds up bowels, celiac or no. Of course, if you're already a regular coffee drinker, your body is likely adjusted to your caffeine intake anyways, so stopping it will make you constipated.

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