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Should I Bother With Getting A Bioposy
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I have been living with many many symptoms of celiacs for 3 years now since I had my son. I first went to my doctor about my symptoms 2.5 years ago and she brought up celiacs and did the blood test. My IgA levels were way low and she did a 2nd blood test and the results were the same. She said it was impossible that my symptoms were from celiacs and left it at that.

Now 2.5 years later and I was feeling worse then ever so I decided to cut out gluten and after a week felt way better. My bloating went down, I was less tired, and my burning rashes on varies parts of my body hurt a bit less, but then I had soy sauce and got sick all over again and went to see my new doctor. She did another blood test and my IgA levels are still low, but she said it is highly likely that celiacs is the culprit due to my stomach issues, iron levels, and burning rashes. She referred me to a GI doctor but they cannot even see me for a 1st visit until the end of January.

Now my question is should I bother with getting a biopsy or continue on being gluten free? I was also considering switching doctors again now that I live in Chicago for ones that are with UIC and their celiacs center.

Any input would be great. Thanks

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Is it ttg IgA or EMA IgA levels that are low? Doctors often run a serum IgA to make sure we have adequate levels of IgA in our bodies to properly test for ttg IgA or EMA (IgA). There is a small portion of the population (I *think* it was about 5% - can't quite remember) who are deficient in IgA and will test negative for celiac even when positive. If she just tested total IgA levels, she has not actually tested for celiac yet, but you would test negative for it (on the most common tests) in that situation. I don't know the other tests well (they were unavailable to me) but I think they are DMG Igg and ttg IGg; you could check those.

Plus if you are gluten-free or gluten-lite, that could cause negative tests too.

If you do decide to pursue a biopsy, and many around here were diagnosed on a biopsy alone, I believe you need to be eating gluten for 6-12 weeks. You would have to stat about now for a January appointment. I also heard it advised to ensure you get as many biopsied spots as possible; I think more than 6 is advised. Apparently that lessens the possibility of missing the damage. I never had a biopsy so I'm not as sure about all this.

If you can go gluten-free without a diagnosis, I would advise you to stay gluten-free and skip the biopsy. 2-3 months is a long time to eat gluten if it makes you unwell. I would have had a tough time staying gluten-free without my diagnosis though so I understand your problem.

Best wishes in whatever you decide to do. i hope you feel well soon.

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It depends on the type of person you are. I think I may have celiacs but there is no way I would diagnose it without a biopsy, for me I need to know beyond a doubt that it is what I have. How annoying would it be if you cut out gluten for years to find out there was another source of your problem? That is my opinion, there are people on this board that favour improvement of symptoms over medical diagnosis but that can be flawed as studies have shown most of the healthy population would improve on a gluten free diet.

There is no doubt that gluten is bad for everyone in general however not to the degree that you would be putting yourself at risk for continuing to eat it, unless you have celiacs of course.

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It depends on the type of person you are. I think I may have celiacs but there is no way I would diagnose it without a biopsy, for me I need to know beyond a doubt that it is what I have. How annoying would it be if you cut out gluten for years to find out there was another source of your problem? That is my opinion, there are people on this board that favour improvement of symptoms over medical diagnosis but that can be flawed as studies have shown most of the healthy population would improve on a gluten free diet.

There is no doubt that gluten is bad for everyone in general however not to the degree that you would be putting yourself at risk for continuing to eat it, unless you have celiacs of course.

What studies have shown that most of the healthy, non-Celiac population would improve on a gluten-free diet? Anyone without Celiac Disease would not show any improvement on a gluten-free diet, unless they do indeed have Celiac. I'd be interested in seeing these studies.

While I was diagnosed through blood work and declined the biopsy, many people here have tried relentlessly to obtain a "medical" diagnosis, for all it's worth. They were not helped by the medical community except for those fortunate ones who had progressive doctors who didn't need to "see" it on a biopsy to figure it out. There are many other ways to diagnose Celiac besides a biopsy. Dietary trials, along with resolution of symptoms,

coupled with gene testing and blood work for deficiencies are extremely useful tools.

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Is it ttg IgA or EMA IgA levels that are low? Doctors often run a serum IgA to make sure we have adequate levels of IgA in our bodies to properly test for ttg IgA or EMA (IgA). There is a small portion of the population (I *think* it was about 5% - can't quite remember) who are deficient in IgA and will test negative for celiac even when positive. If she just tested total IgA levels, she has not actually tested for celiac yet, but you would test negative for it (on the most common tests) in that situation. I don't know the other tests well (they were unavailable to me) but I think they are DMG Igg and ttg IGg; you could check those

Thanks. I need to do this.

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I was also considering switching doctors again now that I live in Chicago for ones that are with UIC and their celiacs center.

Being seen by UoC gets my vote if you are living in Chicago.

If you have only been gluten-free for a week, I suggest continuing to eat gluten until you can be seen. You don't need to overdo it - a slice of gluten containing bread a day is sufficient. If ingesting that much makes you extremely ill, you should consider cutting it out until you are sure that you want to move forward with testing.

Good luck to you :)

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thanks everyone. I have been gluten free for 7 weeks now and I'm not sure about the blood work, both doctors didn't really explain too much to me. I'm just call UIC medical center since my doctors through North Western are not treating this as I would like. I was also told it I have DH tha rash can be biopsied. I have what is believed to be that on my scalp and it is still clearing up too. My desire to eat a drop of gluten is zero but I will talk to the new doctors and see

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I'm just call UIC medical center since my doctors through North Western are not treating this as I would like.

Just wanted to clarify that I was recommending:

The University of Chicago's Celiac Center (UoC)

http://www.cureceliacdisease.org/

I don't know if The University of Illinois at Chicago (UIC) also has a good Celiac Center.

Good luck to you - I hope you are feeling better soon :)

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    • 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.
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