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Not Sure If Gluten Intolerance, Would Love Help And Or Advice!

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I am 28 and my whole life I've felt sick. Doctors and family always told me I just have a "weak stomach" and that I'm a hypochondriac (sp?). For the past 4 or 5 years, I 've had more seemingly unrelated symptoms; severe GERD, numbness and tingling in hands and feet, joint pain, headaches and migraines, chronic nausea,severe stomach pain, fatigue, and anxiety and depression. So far I've been misdiagnosed with anxiety, migraines, endometriosis, fibromyalgia, and stomach ulcers.I've undergone 2 MRI's, x-rays, countless blood work, 1 laporoscopy,an abdomen ultrasound, and an endoscopy and colonoscopy. All I found out was that I am severely B12 and Iron anemic, every other test or procedure produced negative results and all my doctors are treating me as if I'm crazy. I've had several other friends suggest celiac's/gluten allergy but when the biopsy of my small intestine came back negative, I didn't think that was it. Now I've found out that you can have a negative biopsy but still have gluten intolerance. So I've scheduled an appoinment with an allergist on Wednesday to talk more to him about it. My question is this; has anyone here had a negative biopsy before? And if I've cut out gluten for a week, will that result in a negative blood test? I've been gluten free for 3 days now, and at first I started feeling better, I went to sleep without too much pain for the first time in years, but I think I may have accidently had some gluten, because today I am feeling horrible again. Basically, I'm totally lost and depressed and looking for answers. I know many others have felt this way, but I'm just so sick and tired of being sick and tired. Any answers? Suggestions?? I'd REALLY appreciate any help at this point!!!


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Sounds like you have a problem with gluten!


I had a negative biopsy and I am still gluten intolerant.


I suggest you keep eating gluten until ALL testing is done. Not eating gluten could mess up test results. After you see the allergist, I think it would be good to see a regular doctor to have the full celiac panel blood testing done and out of the way! THEN you should be able to go gluten free :)


It sucks waiting... I was on and off gluten for 2 months because I kept deciding I needed more testing and all that stufff. It's so much easier to wait than to wonder the rest of your life!


Btw, some people have negative biopsies and positive blood tests.


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I totally agree with Tayni!

I know its really hard to continue the gluten once you find out that it's causing all your problems...but staying on it for testing reasons is really important to get accurate testing. And trust me, you want to get them ALL out of the way now, then you don't have to wonder down the line and torture yourself all over again. 

Hang in there! I know it's tuff!

I feel really low today. I've completely lost that pizazz that I had when I was gluten-free, I've put back on the 12lbs that I lost due to bloating, water retention, gluten crap food...My mood has been so low, more tired, foggy brain, all the usual ugly symptoms. There are these moments where I'm looking at the reality of being on gluten for one more month(by the time I get tested it'll be a total of 3 1/2 months back on it), like, wow...if I had just pushed harder before I went gluten-free to get these tests-now Im stuck waiting this much longer. I thought by July this would have been a thing of the past- I thought Id weigh less by then. But aghh, I need to get these test done. So like I said, hang in there. I was in the same spot as you back in Jan...and I just wish I had pushed for the all the testing back then(doctors thinking Im crazy aside). For now, as far as my mood goes, I'm just trying to fake it til I make it. Basically trying to trick my brain into believing that its happy by thinking about positive things. It's worked before. ;)



Also, this site it full of wonderful support. :)


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Thank you for the advice. I will start eating gluten again and hopefully get some good news with the testing, and I'll also make an appointment with my regular MD for the full work up!! Thank you so much :)


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Welcome to the board. :)

Have you had all of the celiac blood tests yet? The full panel is:

tTG IgA and tTG IgG



Total serum IgA (a control test)


The AGA tests are the only tests that are thought to show Non-Celiac Gluten Intolerance (NCGI) but it is not a widely accepted view. The other tests show intestinal damage. The DGP tends to pick up celiac the earliest, and the EMA is only positive when the villi damage is extensive. Any GP can order those blood tests (they are not allergy tests). As the others said, keep eating gluten until testing is done.

NCGI has the same symptoms as celiac disease except for the villi damage, and treatment is the same too: lifelong adherence to the gluten-free diet.

When you try going gluten-free again, whether it is due to celiac disease or to see if you have NCGI, be aware that people often hit a withdrawal after a few days. It can last a week to a month. I personally felt much worse at that time; I had a horrible migraine, and I was so tired and grumpy. Blah. It sounds like you might have to expect a withdrawal again too.

Good luck with your appointment.


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    • Ahh good point! She is 13 and has been miserable for over two years. It started with chronic hives. We have been to a dermatologist, and a allergist and they brushed it off to her seasonal allergies and now she has joint pain,bloating,constipation,fatigue,headaches just all around miserable. I just want answers quick. she is getting depressed and says she hates her life cause she doesn't think anyone believes her. It's heart breaking . I hope we get answer soon. Thanks for the advice I will keep her on gluten. She is just miserable and I figured the sooner she is off gluten the sooner she will feel better. 
    • Welllllllll, in this particular case it would be best to keep her on gluten until the results come back. The reason I say this is b/c this GI seems whacky. There's a chance you may need to go to a different GI & have the endoscopy redone. I was going to say get a new GI but since the endoscopy is on Monday then I would go forth with it rather than waiting the time it would take to get a new GI & schedule an endoscopy. This GI seems set that it's not celiac & when they get that in their brain it's usually pretty darn hard for them to admit they were wrong. My concern is that she won't take enough biopsies from the right places b/c she's either dumb about how many & where or letting her personal (already formed) opinion influence what she will do. The problem is that you can't be there in the OR with them standing on the GI's shoulders making her do the right thing. Not knowing your daughters age, the other concern is that there may not be "enough" damage just yet, it may be patchy, etc..... that with the mindset this doc has, she will poo poo the dx.  Let me say that it would be a travesty & wholly awful IF you had to put your daughter through another endoscopy but we know how very important it is for her to have an official, dyed in the wool dx. So I'm just trying to think down the line & prevent problems before they come up. I mean, this doc may not even take any biopsies. That sounds insane I realize, but really, it happens more often than you would think. I can't tell you the number of times we've had people come on here after having an endoscopy for celiac where the doc didn't take any biopsies b/c the doc is so stupid as to think they can see the damage & doesn't realize there MUST be biopsies! If you take her off gluten & heaven forbid, you have to end up putting her back on it to get further testing then chances are she's going to get much, much sicker when she's put back on gluten. That most often happens with us and I'm talking about radically sick. See, I'm basing all my thinking on the fact that despite ALL the positive celiac blood work, this dimwit doc doesn't think it's celiac & instead it's all related to the constipation. That is just so far out there, it's NUTS! She's flying in the face of hard evidence! Every test you listed was positive. I can't even begin to understand how this GI comes to her insane conclusion. THAT'S why I am so concerned. 
    • Thanks for your reply. That's what my husband and I thought too. She has a ton of symptoms that's fit celiac. Also I was going to start her gluten free diet after her biopsy on Monday cause the dr said the results take two weeks. Is there a reason I should keep her eating gluten until we get the results? Thanks for your help.
    • In reflex testing they look at a result and decide if the next test is needed.  Another example, some labs only do EMA if the Ttg is positive.
    • Her blood panel is POSITIVE!!!! She's celiac! I don't know what in the world the GI is thinking. That's crazy! The GI obviously doesn't really know celiac. The constipation is tripping her up but celiacs can be constipated as much as they can go the other way and more than 50% of dx'd celiacs presented with NO GI issues. Keep her eating gluten until you get the results of the endoscopic biopsies.
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