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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Do You React To Different Gluten Sources Differently?
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6 posts in this topic

Hi everyone,

I have been suffering from sinusitis for years off and on, but this last time has been particularly maddening since my head will not completely drain like it would before. My head has not been clear like before in over two years this time. I have tried everything and still keep coming back to food intolerance and possible additional problems with candida due to previous antibiotic use. Not to be gross, but I have strings of stuff that is just now draining after trying to reduce gluten and taking probiotics, but I still can't get 'back to normal'. I went to western-minded docs (incl. ENT) and they said they couldn't find anything except a maxillary cyst (which they said couldn't cause problems) but 'they love to do surgery' and if things didn't improve I could do that. Um.....no thanks. Anyway, my family thinks I am insane because I am trying to avoid gluten most of the time (and sometimes dairy as well) and they even say things like 'well, I LOVE gluten - I will eat mine with EXTRA gluten'. Like I said, they think I'm nuts.

Sometimes I do cave in on Friday nights when they order pizza (a nationwide chain). I just get so discouraged because I don't have the money to test at Enterolab yet, and I get tired of trying to fight upstream against everything sometimes. I know I feel bad after eating pizza but I have noticed a weird thing going on. If I eat the hash rounds at Burger King (which I just now found out have wheat - I thought they were gluten-free in a dedicated fryer like the fries which don't really bother me) I get TERRIBLE leg cramps (like charlie horses). Only SOMETIMES do I get these same weird leg cramps when I eat pizza. One time I made a bunch of muffins and ate 3 before going to bed, and I woke up screaming in the middle of the night with the worst and longest-lasting charlie horse I have ever had in my life.

My questions are:

Why is it that hash rounds/potato cakes and muffins can cause pain but not always pizza? It seems to me the pizza crust would have WAY more gluten than what is on the hash rounds (although there is the cc issue).

Do any of you only react SOMETIMES to gluten and only to particular sources?

Is it possible I have some other weird intolerance going on like soy instead, or even in addition to gluten problems (I do suspect dairy)?

Thanks!!

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Is it possible I have some other weird intolerance going on like soy instead, or even in addition to gluten problems (I do suspect dairy)?

It's quite possible you have a dairy intolerance. Dairy makes my nose run like mad. When I eliminated it in a trial a few years ago, my constant nasal drip disappeared within a day. Eating/drinking dairy afterward had a very noticeable reaction within a few hours. So yes, diary can cause sinusitis or make nasal drip a lot worse. Pity I can't give it up, I just put up with the nose running :) If I consistently eat the same amount of dairy each day, I find the symptoms do get milder, as if your body gets used to it, but it might not be worth it for you.

Also look into histamine intolerance - do you get migraines or headaches, jaw pain, sinus pain after eating chocolate, cheese, avocados or wine? With me if I eat a lot of chocolate, like an entire slab, I'll guaranteed be off sick the next day or two with a sinus infection/nasty cold! Somehow the chocolate releases a ton of histamine in my body, or possibly drives down my immune system so that I'm susceptible to getting sick. Chocolate in small amounts seems to be fine :)

I found these connections by keeping a food journal daily, keeping track of food eaten and symptoms. The chocolate/getting sick connection came up very quickly. I also found out I had a severe GI intolerance to chicken, so it was *definitely* worth a few minutes a day doing it :)

As for your gluten questions - I never saw any link between my gluten consumption and symptoms in my food journal way back. My other diary/chocolate symptoms are clear as *night* and *day*, I swear! :) I think the only way to know for sure is to keep a strict gluten-free diet for at least a month and see how you feel. It can take a while to get rid of all the gluten poison running around your body, and your gut takes time to heal, if it's damaged.

Also, it's only when I went off gluten completely that I really started reacting badly to small amounts of gluten. There's a "masking" effect in place when you're eating wheat all the time, similar to the dairy thing I think, where you don't feel so bad, but take it away and you really get sensitive to it.

I sympathize with the family comments - just ignore them and do what's right for you. Celiac disease is hereditary, so chances are they're also suffering and you've found the key to make you feel better! I think people feel threatened by others with "special" diets, they want you to eat what they're eating to justify their diet, pigging out on bread etc. They can't understand that it's not a "fad", we're really sick and desperate to try anything to feel better. :/

By the way, if you haven't already, I'd highly recommend seeing a GP and getting a blood test for celiac done before going gluten-free (Just make sure they test IgA, not IgE levels!) Don't take no for an answer! If you are diagnostically celiac (and it can happen without any GI problems at all!), then you've got something to justify your diet to your family, and they may need to go for testing as well!

Hope this long answer helps, and good luck with finding the cause of your issues!

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I think it might be the fact that potatoes are a nightshade. I not only had terrible leg pains from potatoes, but I literally couldn't walk for about two weeks after eating them. The alkaloids in nightshades are actually toxic to everyone, but most people have a high enough tolerance so as to not notice any effect. But with a leaky gut (which Celiac tends to cause), those toxins can more easily pass into the bloodstream. Candida overgrowth can also cause or accompany a leaky gut.

Try taro root instead of potatoes. They are white inside, and can be fried, baked, mashed, boiled, etc just like potatoes. I've even made chips out of them. The flavor is very similar too, though I actually prefer the taste of taro over potato. It's slightly sweeter, with a hint of what many describe as tasting like water chestnut.

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I and someone else also noticed more reactions to small gluten sources than to huge gluten sources. Happens sometimes.

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I had a problen with my neck vertabrae being slightly out of line and after seeing a chiropractor learned to re-align the vertabrae and when I did that my sinuses would drain. From another chiro. - he said that whenever we are exposed to something we react to that our head instinctively jerks back and this may cause a misalingment. I also feel better, not so fog headed and the ringing in my ears is much less, I think it restores good circulation to the brain.

One reason for leg cramps and stiff muscles is that your body may be too acid rather than the normal slightly alkaline. You can get pH strips and test the saliva first thing in the morning before brushing teeth or putting anything in your mouth and if it is acid you can correct it. I read up on this and I find if I eat more vegetables than carbs amd high protein foods such as meat it's unusual for me to have leg cramps and still muscles. Search for 'acid forming foods'. I always try to add enough alkaline forming food anytime I eat acid forming foods. 3 muffins with nothing to balance them would give me cramps.

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Wow! Thank you so much to all of you for your responses so far - these are great ideas!

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    • Weird Reaction
      Hi Cristiana, You are quite right, there could be something wrong with the batch. I have often wondered this myself when I've had symptoms. A lot of manufacturers recall products when they find contamination issues, I often wonder though, how many products 'sneak' under the radar and no-one knows for sure; it could be the reason why so many of us wonder what we did to get 'glutened'. 
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      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
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