Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

No Celiac
0

9 posts in this topic

Well, my diagnosis is no Celiac Sprue from my endocscopy.

My results are in. No Celiac, and no h.pylori, thank god!

He did say that because I've been gluten-free it could effect results, BUT he said he saw none of the typical signs of sprue. I asked him what those were and he said there were certain "histological" signs, whatever that is, and he said I had none.

He also didn't think I had it just from looking at my bloodwork.

So, the diagnosis is no Celiac.

That is good for getting health insurance:)

I have no intention of eating gluten again, but I won't panic so much when I eat out now.

He says I have reflux but no damage. I am taking Nexium for this.

He also says I have IBS ( I knew this of course) with lactose intolerance. I'm not sure how he "knows" this but it's what he suspects at least.

Not a problem since I've been eating well and rarely eat dairy.

But I need a sour cream and cream cheese subsitute for sure!

Are they any lactose intolerant people who can handle cheese?

0

Share this post


Link to post
Share on other sites


Ads by Google:

Well, how do you feel about these results? Are you concerned that questions might not be answered in regards to your overall health? Are you relieved? Do you have some concern that the results are wrong? Or do you feel that the results make sense for other reasons?

0

Share this post


Link to post
Share on other sites

Well if you have been gluten free of course the endoscopy would show negative. The damage would heal, you would get an endoscopy, it would show negative, and he would say you don't have celiac...that then may not be true.

Which blood tests did you have done originally and what were the results?

If it's not this then what is it? There is obviously something going on.

0

Share this post


Link to post
Share on other sites

That has to be a little disappointing. I have been diagnosed with IBS, and I guess since we still know so little about it, it still kinda seems like a bogus diagnosis. If you have predominant const., try Zelnorm. It does help some. I have heard that Zoloft really does help with the spasms too and is not diagnosed just because some doc thinks it's all in your head. :P A good resource with an active forum like this is Heather's IBS page. If you google it, it will come up on top. I would stay gluten free, but also stick to soluble fiber and not insoluble - there is a big difference with IBS. She also has an article about which types of fiber supplements are good and which contain chemicals that might cause spasms. (Like Benefiber powder vs. the chews - they are different). Best of luck towards feeling better - did they say yea or nea yet on the thyroid trouble? I remember your stuff sounding very much like thyroid...

0

Share this post


Link to post
Share on other sites

My blood test results were:

Antigliadin ABs IgA 8

Antigliadin Abs IgG 47

Transglutaminase IgA 4

Dr. told me just from looking at this before endoscopy he did not think I had celiac disease.

He said the most important test, the one they really look at is the bottom one, the Transglutaminase. He said it used to be they looked at all of them but in the past few years they have realized the bottom test is the most important in identifying celiac disease.

It says in the report of the 3 tests:

Test 1: Reticulin IgA antibodies are specific for celiac disease and occur in 60% of patients with active disease.

Test 2: IgG antibodies are NOT specific for celiac disease and occur in 20% of patients with active disease. This is the only one I tested high in.

Test 3: Tissue transglutaminase has been identifed as they endomysial antigen. Studies have demonstrated that endomysial IGA antibodies have over 99% specificity for gluten sensitive enteropathy.

According to this I only have a 20% chance of having celiac disease. (of course I could still be gluten intolerant)

Because of this and the fact that he saw no histological signs or biopsy problems he says I don't have celiac disease.

I'm not going back to gluten, or anything like that. I will just be a teensy bit less worried when I eat out that there was a cross contamination issue.

They tested my thyroid and that is not the problem. It came out OK..so it is still a mystery! BTW, I can't use Zelnorm b/c my main problem with IBS isn't constipation...it's the other side, if you know what I mean! LOL

He did give me a brand new IBS drug called Nu-lev or something like that. He says his wife has IBS and swears by it. When you get pain you pop a pill that dissolves under your tongue. He says it literally abates the attack.

I'm going to try it as soon as my tummy acts up again!

He also says I have "reflux without damage" which he says is obviously better than its counterpart, reflux with damage. I am taking Nexium and it has really been helping.

0

Share this post


Link to post
Share on other sites




Hi Matilda,

I don't know what to think at this point. My dr. thinks I do not have celiac disease because of my bloodwork and endo. I never had an endoscopy before this one. If I had had a positive endoscopy earlier, of course I would believe I have celiac disease! I would not have even bothered with further testing.

My other GI dr. also did not believe I had celiac disease but he never did the endo so he couldn't say with certainty.

I didn't really say I was going to relax about gluten, I just said when I eat out I won't have as much anxiety; I won't worry about it as much. Usually I freak out when I'm in a restaurant b/c I'm sure they're going to gluten me.

To me it looks like I have about a 20% chance of having celiac disease. That is not very high. It's not to say I don't believe I have it, that is just not very high.

I'm not eating gluten either way so it's not like I'm in denial or something.

I also heard candida can make it look like you have celiac disease and I know for certain I have candida issues. Perhaps that is why my blood work came back as it did...

Don't know...but I am staying gluten free for sure.

0

Share this post


Link to post
Share on other sites

How long have you been following the gluten-free diet? I know I became lactose intolerant shortly before I got my actual diagnosis of celiac disease, but after a few months on the gluten-free diet, I was able to eat dairy again with no problem...perhaps this could be true in your case even if you are only gluten intolerant or something like that?

Laurie

0

Share this post


Link to post
Share on other sites

I've been gluten-free for 6 months.

My dr. thinks I'm lactose intolerant. He says this b/c he says that IBS and lactose intolerant are almost always seen together, and I have IBS.

I've already cut down on dairy but now I'll probably go even less or none.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,352
    • Total Posts
      920,502
  • Topics

  • Posts

    • This is EXACTLY what happens to me. It has twice now and both times was after both glutening episodes but once it was the day after and the other time it was a week and a half. So I'm still not sure if it's related or strange bug bites...

      Did they stop happening when she stopped being glutened? Did you decide they were definitely related? I'm really confused by this and would love to know whether to insecticide my house or....
    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
    • I was tested for the full panel, I believe. I had normal values for t-transglutaminase (ttg) igg,t-transglutaminase (ttg) iga, deamidated gliadin abs igg, deamidated gliadin abs iga, and immunoglobulin a qn serum.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,416
    • Most Online
      1,763

    Newest Member
    djs2117
    Joined