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Test Results Are In.
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4 posts in this topic

Ok, the results for my endo are in and my small bowel biopsy is normal. I have no ulcers anywhere,although I still have blood in my stool. So if both my blood test and biopsy are negative that means what. Could I still have celiac or is this all in my head. I don't have diarrhea all the time and I can eat bread and not react all the time but then again when I do I end up having an accident and it is usually when I am out shopping or in my car. I am lactose intolerant and have leg pain and brain fog as well as the cramping in my gut and pain in my abdomen. So I don't understand how the tests came back normal.

The nurse told me the doc only took 2 biopsy's from my small bowel so could that be why it is normal he didn't get to the damage or is there even any damage. I am beginning to feel like I really am a hypochondriac.

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Both blood and biopsy can be negative. Two samples is not very many. My Celiac GI takes 6, some say 3 is enough. Regardless, if you have symptoms that led you to Celiac testing, it seems the next step is to completely remove gluten for at least three months.

If it turns out you improve on gluten-free trial, you have your answer - don't eat gluten. All of my kids/grands tested negative, yet had improved symptoms gluten-free.

I know it can be very frustrating - the "normal"/negative medical testing system can make anyone feel like a hypochondriac - don't let it get you down, trial removing gluten - keep asking questions until you find your answers.

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Two biopsies is not enough!! It is baffling that a GI would only take two biopsies when looking for celiac! I would NOT consider this biopsy to be valuable in your diagnosis. I was diagnosed with biopsy that she had taken 6+ samples, when my 8 year old had her scope done, they took a total of 8 samples.

Did you say you had celiac blood work?

If your testing is complete, go for the gluten free diet----- if you have relief, you may have your own "diagnosis". That is where we are with our oldest child, she has positive blood work for celiac but normal biopsy so doc won't diagnose her, we are not taking her totally gluten free to get our own answers :) sometimes you have to rely on yourself and your own experience!

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Please realize that you can have a serious problem with gluten that ISN'T celiac disease! If it makes you sick- don't eat it! You don't need to have a drs permission to feel better.

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    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
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