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heather Goble

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Hi,

I have always dealt with multiple annoying symptoms that I thought were just normal things people deal with, maybe some more than others. I am tired, make that exhausted- all the time, ever since I can remember. I would come home from school and crash until dinner because I couldn't make it through the rest of the evening. It is to the point that it is miserable. I have headaches daily, stomach issues, mainly bloating and gas after eating, a horrible memory (i'd really love to be able to beat my 4 year old at spider man memory once in a while), mood swings, irregular period and achy knees. And then there are the weird things like my big toe going numb and wanting to rip my ears off because they itch so bad, the sides of my knees are often itchy too. I started to look for answers to all of these symptoms and everything pointed to gluten intolerance, all of them, even the weird ones. I can understand one or two as they are symptoms of a number of things, but all of them? I ran all of these symptoms by my doctor who suggested I see a GI since I most likely have IBS and/or an iron deficiency (which I sometimes have). He wanted to do basic blood work and I asked him to also check for celiac since he would be drawing blood anyway. He asked why I would think that and that I most likely don't have that. Both of my sons have celiac symptoms and have been tested by their pediatrician upon his suggestion, but they have both tested negative as well and that was the end of it.

I got the results back which were negative, but when I read about testing I am seeing tests that I didn't have. The only things celiac related on my results are deamidated Gliadin Abs, IgA, which was 2.2 and deamidated Gliadin Abs, IgG, which was 0.7. Is that it? I had the testing done almost a year ago and upon getting the negative diagnosis wrote it off as just that, but I cannot deal with being miserable any longer! I feel like my doctor thinks I am a hypochondriac and I am getting no where. I read that often blood tests are negative and even so, there is the possibility of gluten intolerance, not celiac. So long story short, I have decided to start eliminating gluten to see how it goes. I started last week, but gave in to a slice of cake 5 days in. I itched all over and felt like someone was sitting on my chest along with bloating. I am trying again (that was the only time I indulged), and am going into my second week. I don't have any headaches, I'm still tired, but not exhausted and am experiencing less bloating. How long should I wait until challenging this to see if I have any reactions and should I seek further medical advice?

Thanks!

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Have you been tested for a wheat allergy. Either way, sounds like gluten is not for you.

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Have you been tested for a wheat allergy. Either way, sounds like gluten is not for you.

Hi Looking for answers,

No I have never had allergy tests done, but am thinking about starting there. Hopefully it will get the ball rolling as far as some sort of diagnosis and answer.

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I think you just did the elimination/challenge thing with the chocolate cake.

But if you want to do it again, you can do it as often as you like.

If you are Celiac or gluten intolerant, you will get the same result. You will feel like crap.

I think you have your answer.

But if you want more medical confirmation, you should keep eating it and get tested again.

Otherwise stay gluten free and continue to feel better.

Sometimes it's not just food elimination, it is Dr. elimination too!

Just my opinion.

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I am just worried that 5 days wasn't enough to be off of gluten to get a reliable reaction when I (gave in) and ate some, and also thought the itching reaction was weird (more like an allergy symptom). I haven't tried it again yet and just don't know how long I'm supposed to wait to get a legitimate reaction. I feel a little silly to "need an answer," but I guess I feel like it will just make the whole process a little easier or more justifiable.

I think you just did the elimination/challenge thing with the chocolate cake.

But if you want to do it again, you can do it as often as you like.

If you are Celiac or gluten intolerant, you will get the same result. You will feel like crap.

I think you have your answer.

But if you want more medical confirmation, you should keep eating it and get tested again.

Otherwise stay gluten free and continue to feel better.

Sometimes it's not just food elimination, it is Dr. elimination too!

Just my opinion.

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After two weeks, even with the chocolate cake, it is probably too late to have the testing done now because the antibodies will have done a vanishing act and your gut started to heal.. But if you want a doctor-sanctioned diagnosis you are looking at 2-3 months of gluten equivalent of 3-4 slices of bread a day . However, if you tested negative for celiac a year ago, and both your sons (although symptomatic) also tested negative, then there is the chance that you will once again test negative with negative biopsy. Some forms of gluten intolerance they cannot test for yet, primarily the neuro symptom kind.

If you had a massive reaction to chocolate cake after only five days free I would think that that is answer enough. Itching is a common symptom once you go gluten free - it is often indicative of an additional intolerance, although it could also be to gluten. For me it was soy and came on within a week of going gluten free. Unless you want to keep torturing yourself, I would give the diet a good three month trial. At the end of that time if you have not noticed any improvement than you can pretty much rule out gluten as being a problem for you. However, you should also eliminate lactose if you have the bloating and gas symptoms, as if you have intestinal damage you will likely have trouble digesting milk, ice cream, etc. You may be able to eat yogurt and hard cheeses.

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Thanks- that info was helpful. I was just confused by the itching reaction since it wasn't anything I've experienced before. I've been itchy to some degree, but never all over like that. It happened again a few days(5) later, even though I didn't have anything with gluten in it (maybe cross contamination?) I don't know..... It happened after lunch and lasted all night with mild wheezing. I eat lunch with my students in a cafeteria (but bring my own from home). I have had lactose issues for a while (mostly digestive) and have problems with nuts (headaches and sometimes nausea) add artificial sweeteners to that list too- they give me horrendous headaches, even just from chewing a piece of sugarless gum. I also have intolerances that I can't figure out like popcorn - first I thought it was the preservatives used, but even eating just plain air popped popcorn gives me headaches and stomach aches- big time. I am guessing the problems with bacon and sausage are preservatives or nitrites? There is not a whole lot I can eat and be able to walk away from the table still feeling good. However staying away from the knowns and now avoiding gluten has me experiencing much less headaches and I generally feel a little better. I am also not drifting off mid-afternoon. I guess it just takes time and some experimenting to see what works.

After two weeks, even with the chocolate cake, it is probably too late to have the testing done now because the antibodies will have done a vanishing act and your gut started to heal.. But if you want a doctor-sanctioned diagnosis you are looking at 2-3 months of gluten equivalent of 3-4 slices of bread a day . However, if you tested negative for celiac a year ago, and both your sons (although symptomatic) also tested negative, then there is the chance that you will once again test negative with negative biopsy. Some forms of gluten intolerance they cannot test for yet, primarily the neuro symptom kind.

If you had a massive reaction to chocolate cake after only five days free I would think that that is answer enough. Itching is a common symptom once you go gluten free - it is often indicative of an additional intolerance, although it could also be to gluten. For me it was soy and came on within a week of going gluten free. Unless you want to keep torturing yourself, I would give the diet a good three month trial. At the end of that time if you have not noticed any improvement than you can pretty much rule out gluten as being a problem for you. However, you should also eliminate lactose if you have the bloating and gas symptoms, as if you have intestinal damage you will likely have trouble digesting milk, ice cream, etc. You may be able to eat yogurt and hard cheeses.

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