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Following Strict gluten-free Diet But Some Coeliac Symptoms Persist
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I was severely ill with coeliacs before diagnosis - night sweats severe weight loss, vomiting all night 4-5 nights per week, extremely severe diarrhoea, villous erosion and leaky intestines were found on testing. Following a gluten-free diet strictly reduced the symptoms dramatically, and due to the level of villous erosion it was understandable that some minor intestinal symptoms continued. But it has been a few years now, and I still suffer regularly with diarrhoea, reflux, bloating, nausea, stomach pains, tiredness. Admittedly nowhere near the levels I had before adopting the diet. A year or so ago I was found to be mildly persistently anaemic and put on iron supplements. Recent blood tests showed that I have severe calcium deficiency despite my healthy diet and I am now on supplements. My doctor has not indicated that these could be related to coeliacs but these are known symptoms. I recently read on this site that one form of the disease is non-responsive to a gluten-free diet. I am VERY careful following my diet, but I was wondering if anyone knew whether the so-called non responsive coeliacs does improve slightly with a gluten-free diet, and therefore whether this may be what I have?

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Have you ruled out other intolerances like soy and dairy? Are you being very careful to avoid cross contamination in your home and if you eat in restaurants are you bringing to their attention all they need to do to keep you safe? One other thought is if you are consuming products with Codex Wheat Starch? Although technically gluten free many of us can not tolerate them.

People that have refractory sprue can improve a bit but won't, in my understanding, recover completely. However in some instances it isn't refractory sprue that is preventing them from healing but instead is their being very sensitive to CC and not being aware that it isn't just the food we eat but also the way it is prepared as well as non-food related things like, for example, kissing a significant other who has just finished a sandwich or a gluten beverage without brushing their teeth first or baking with gluten flours for the rest of the family.

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Have you ruled out other intolerances like soy and dairy? Are you being very careful to avoid cross contamination in your home and if you eat in restaurants are you bringing to their attention all they need to do to keep you safe? One other thought is if you are consuming products with Codex Wheat Starch? Although technically gluten free many of us can not tolerate them.

People that have refractory sprue can improve a bit but won't, in my understanding, recover completely. However in some instances it isn't refractory sprue that is preventing them from healing but instead is their being very sensitive to CC and not being aware that it isn't just the food we eat but also the way it is prepared as well as non-food related things like, for example, kissing a significant other who has just finished a sandwich or a gluten beverage without brushing their teeth first or baking with gluten flours for the rest of the family.

Hi, thank you for your thoughts. I know I have issues with casein so avoid dairy. Used soy milk as a substitute but found that it was seriously interfering with my hormone levels, so have also been soy free for a year or so. I am scrupulous in my diet - and even make up, skin care etc! I found codex wheat starch still caused symptoms so stopped consuming it very early on. I make most things myself from scratch and my partner consumes no gluten except bread which I do not handle, we have separate utensils (board, knife etc) for, it is stored away from all other food products and he uses butter which I don't eat, so I think I am pretty on the ball. This is the reason I am asking advice here - I check and recheck my diet, I know I am hyper sensitive to gluten and very rarely eat out due to this. I am running out of ideas and my current doctor doesn't't seem to have much interest. In fact a while ack I was persuaded not to go for my yearly check ups with a specialist as the surgery was trying to cut costs (I live in the uk - viva the NHS!) there doesn't seem to be any recognition in the doctors I have dealt with that some cases of coeliacs may not be resolved by diet alone. I am hoping to get some advice so that I know how likely this is or if there are other possibilities. I really don't want to go through the barrage of invasive, painful and distressing tests I had before unless absolutely necessary!

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Another food intolerance that could be getting you is nightshades, (potato, pepper, tomatoes). Other food intolerances besides gluten are possible and can cause pretty severe symptoms sometimes. If you are eating mostly whole foods and not processed foods, and have a clean environment, then I'd be looking for other food intolerances at this point.

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I agree with the nightshade idea. I, on occasion, will only eat potatos out of that family. THe rest? Forget it, i've pretty much cut it out of my diet.

I just recently cut soy too (as i believe it caused me some bloating). I'll give it a while before i try it again.

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Have you had repeat blood testing to see if your antibody levels have gone down?

There are many possibilities for celiac disease like symptoms, some of which were mentioned above.

I will tell you about the one which applied to me and my son. It is widely accepted that for the vast majority of people with celiac disease the accepted 20 ppm proposed allowed levels in gluten free food is safe. My GI however, has told me that for some they are not. He thinks that most if not all celiac sprue diagnoses are caused by celiacs who are sensitive to very low levels of gluten. I found that to be the case for me. I had ongoing symptoms until I was crazy careful with my diet. I hardly eat anything that comes in a jar or package. I do careful elimination/challenge diets for everything that I eat, even produce. I had to consider everything, even supplements and spices, and my partner had to go gluten free too.

The best way to see if this might apply to you would be to go on a produce only diet for a week. Best wishes figuring out what is going on.

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both calcium and iron require acid to be utilized. are you on acid reducing meds? Even if you are not, you could have low stomach acid. especially as we age. If you can't get testing for it, you could try betaine hydrochloride tabs, if you can't get those, Vitamin C may do the trick, but not the buffered one, lol.

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    • Thank you for going through my long post and responding. I have been both dairy and gluten-free free for 10 months now. Yes, even I was worried about other food allergies. I mentioned it to my GI doc and asked if I need food allergy test to eliminate other allergens. He said, food allergy tests give a lot of false positives and are not accurate. He said: not everything is because of food allergy and it's refractory celiac which is causing issues as the jejunum biopsy, done recently, is showing villous flattening.

      My doubt: 1. If I have so much damage in my small intestine (villous flattening) then how was I keeping fine for 6-7 months ( eating eggs, soy, rice and meat) - was constantly losing weight though - but was able to work out regularly - not much fatigue. 2. If it is other food allergens ( out of mentioned allergens, I take eggs, soy chunks, almonds only) why does it happen only few times and not always - I keep well for 7-8 days and then fall sick again - this without any change in diet.  
    • Oh, Trish at the GlutenFreeWatchDog tested Planter's honey roasted peanuts three years ago.  The can did not state gluten-free, but showed no gluten ingrediants (per Kraft policy).  Test result: less than 5 part per million which is pretty much gluten-free.  
    • What if it were something else that glutened you?  Maybe you ate too much of a good thing?  I once (three months post dx) ate too much gluten-free fried chicken, vomited, passed out and fractured my back (osteoporosis) in the process.  Paramedics, ER doc and Cardio all thought I was having a heart attack.   No.  It was sheer gluttony and bad bones.  Not good to overload with a damaged gut.    Maybe you did get some contaminated nuts.  Afterall, anything processed is suspect.  What might be well tolerated by some, might be too much for others.  We all have our various levels of gluten intolerance.   The old 20 parts per million is just a guideline, but science does not really know (lack of funding......doe anyone really care enough to find out?)  My hubby has been gluten-free for 15 years.  When I was first diagnosed, I tried to eat the gluten-free foods that I normally gave him.   Problem was he was healed and I was not.  Things like Xanthan Gum in commercial processed gluten-free breads make me feel like I have been glutened, but it is just (and still is) an intolerance.  So no bread for me unless I make it myself using a different gum.   Too lazy, so I do without.   so, ask your doctor if you really want to know or lay off the cashews and test them again in a month using a certified gluten-free nut.  I wish this was easier!    
    • I have intolerances to a few foods now, so I was wondering about that.. I love cashews though, and a month or two ago I was eating them all the time with no problems at all. I mean, could I really have developed an intolerance to them since then? I don't know if they're made on shared lines (it didn't say on the package so I assumed they weren't), but I'll give them a call. I'm really, really sensitive to cross contamination. Even if something is just made in the same facility (but not on shared lines) it will make me sick. If that's not it, then I'm not really sure
    • Research with KP and find a celiac-savvy GI in your area ( read the biographies). and ask your PCP/GP for a referral to that specific GI (not his buddy).  Ask the GI for the rest  of the celiac panel or proceed with an endoscopy/biopsies -- 4 to six.  Keep eating gluten daily until all testing is complete.  Document and request in writing.  Do not worry about symptoms.  There are over 300 of them and some celiacs have none!   Research all that you can about celiac disease.  The University of Chicago has a great celiac website that has testing Information etc.   Poet me know how it works out.  Hope you feel better soon!  
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