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Told you don't have celiac, but do?
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Anyone been told they dont have celiac and really did? my daughter has all the symptoms but has been told she doesnt have it. after upper and lower gi"s , barium, colonoscopys, blood tests, she has no diagnosis but still has very loose stools with so much pain it causes her to pass out. originally it was diagnosed ibs but that medicine did nothing. she is lactose intolerant. she doesnt eat dairy or if she has a little she takes lactaid pills. her stomach is bloated most of the time. we took her off wheat or so we thought..we had no idea how much stuff it is in. we are trying to do better but lack the information on all the names of gluten. i have been doing research and eliminating more foods. anyone have any suggestions? she is embarrassed by this and is afraid to go places incase she passes out while on the toilet.

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I hope she remains gluten free. How old is she? My husband gave up gluten just over 2 yrs ago. It took 5-6 months for the diarrhea to disappear but he was feeling so much better almost immediately despite the D while his intestines healed. He too had episodes of passing out and worried it would happen while out of the house. The passing out from intestine cramping scared me too! Once he got sick on the way north for my father's funeral. We had just switched driving because he was feeling so ill...and as I was driving he passed out in the passenger seat...kids saw it all and it was not pretty. I am so thankful he has not had one passing out incident since going gluten free!

Good luck. You are correct...gluten is in so many things you wouldn't ever think of...but once you find that out and find the products that don't contain gluten...you'll be doing just fine.

Oh, and my dh has not been tested for anything...he hates doctors.

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False negatives are not uncommon with celiac. My false negative results in blood tests cost me years and almost my life.

If you are done with testing do give the diet a good strict try. It does take some getting used to but we are here to help in any way we can. Read as much here as you can and ask anything you need to.

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I was told that I could not have celiac and that my genes were negative (which they aren't), fast forward 2 years of increasing sickness and pain. And basically now I will never get a diagnosis but a celiac specialist here says that there is no way it could be anything else, he is certain I have celiac. Doh - stupid Drs, Stupid tests!!!

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I was told that I could not have celiac and that my genes were negative (which they aren't), fast forward 2 years of increasing sickness and pain. And basically now I will never get a diagnosis but a celiac specialist here says that there is no way it could be anything else, he is certain I have celiac. Doh - stupid Drs, Stupid tests!!!

Beebs who told you that you didn't have the genes and how did you find out you did? Thanks!

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It IS hard to avoid gluten even with all the so-called "gluten free" items on the market. So far I'm having a pretty high failure rate, I react to a lot of the stuff on the market. The one tried-and-true things is to go back to the basics and just cut out all processed food until you are feeling good and your symptoms are stable - then try one processed item for several days before adding another. Perhaps you are at the point where you should do that with your daughter.

Things that have tripped me up:

Spices. I got sick on the ones we had so we replaced them. I've heard here single-ingredient ones from McCormick are good, that's what we're using now and it seems fine.

Random ingredients. Read EVERYTHING, before you cook with it - even the little stuff that seems it should be gluten-free. I glutened myself for 2 whole weeks eating "gluten-free" muffins my hubby made for me. I got so sick finally that I went through our cupboards and discovered the culprit ingredient - baking soda that had a label on the box saying it had been processed alongside wheat. We wouldn't have thought to worry about baking soda, but there you have it.

Gluten-free oats. I assumed I wouldn't be one of the people that react to them. I was wrong.

At this point I am tired of feeling sick so I am not eating anything but meat and veggies and rice. And it's working! I think that's the way to go for your girl. Good luck!!

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Beebs who told you that you didn't have the genes and how did you find out you did? Thanks!

My GP, I am thinking two things here either a) he didn't know enough about the tests so when he ordered the panel he thought that was the genes as well or B) he forgot to order them, but because he already told me he did, he fibbed to cover himself. Because I don't have classic symptoms he thought he'd be safe enough anyway.

So I found out I did because one of the most respected celiac doctors here said he'd see me because I had such severe symptoms but negative genes and bloods and he asked for a copy of all my tests - which is when it came to light that the genes hadn't been done. So I had my genes tested and yes I have DQ8.

I guess the other interesting thing is that my reaction to eating gluten is life threatening - I get intussusception (where the bowel kind of eats itself TMI I know) its considered a medical emergency - and yet my bloods where negative. So basically - if someone has negative bloods I never think that means no celiac - same as with the biopsy - this stuff gets missed all the time!

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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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