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Following Strict gluten-free Diet But Some Coeliac Symptoms Persist


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#1 Marimarston

 
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Posted 08 October 2012 - 02:01 AM

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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marianne

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#2 ravenwoodglass

 
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Posted 08 October 2012 - 04:15 AM

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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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 Marimarston

 
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Posted 08 October 2012 - 07:49 AM

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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marianne

#4 GFinDC

 
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Posted 08 October 2012 - 08:26 AM

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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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#5 shadowicewolf

 
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Posted 08 October 2012 - 09:29 AM

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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#6 dilettantesteph

 
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Posted 09 October 2012 - 03:09 AM

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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#7 frieze

 
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Posted 09 October 2012 - 03:49 AM

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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