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
      104,652
    • Total Posts
      921,612
  • Topics

  • Posts

    • So, LST my celiac sibling thinks I should see a naturopath to get additional food sensitivity tests. I think this is swell, but expensive for me. He had a panel done and was reacting to some foods he ate the most of. I have reached out to a local allergist and they do food testing but do not accept my insurance. I was going to make some more calls tomorrow. I actually do have mild reactive airway disease too which seems to go hand-in-hand with the allergists. I honestly had no idea, but makes since. What type of tests have folks had? I know I am not allergic to most foods as of November. My former GI doc ran a basic panel then but it seemed short. Has anyone had any luck with these? I read there is a difference between IGE and IGG tests. Anyone get a doc to order them and insurance to cover? I may end up having to save up for awhile to have this done with a naturopath. But I was off of payroll recently with all of this and the idea of waiting for a couple of more months to find out what other foods may be trigging me really sucks. I am off of dairy and soy, suspicious of lettuce and shrimp.
    • How about reaching out to your local celiac disease support group? http://www.houstonceliacs.org
    • Yes, I am in Houston, TX. Can anyone recommend a good GI in Houston, lots of experience with celiac?  
    • I am sorry to hear about your mother.   It is not so hard to get a medical doctor to order a celiac panel -- especially if your father was diagnosed with celiac disease.  Our family GP did not blink an eye when I first asked my daughter to be tested.    If you think your doctor will disregard your legitimate request, you can either fire him or put the request in writing and send it certified (attorneys love documentation!)  I agree that our doctors should support us.  I have a great GI, but my GP  is pretty clueless when it comes to celiac disease, but she admits it.    She does always order all the lab tests I request.  Perhaps it is because I come in with supporting medical documentation and evidence.  If she was not supportive to my satisfaction, I would find a new doctor.   Again, you can go gluten free in your own.   Chance are you have celiac disease.    But it is hard.  Really hard if you do not have the support of your family.  That is my concern.   Are you in the US?  
    • I've just read SO MUCH about the long, arduous process of getting a positive diagnosis through traditional medicine - I'm not sure I want to put myself through all that. Since my father WAS positively diagnosed - I carry the celiac gene and another gene that predisposes me to gluten sensitivity - and my fecal tests for gliadin were SO elevated - there are enough reasons for me to go to a gluten free diet. The true medical diagnosis would just make it easier for my family/friends to believe the necessity of it. My children are adults and not particularly health care nuts. I doubt they would take their own risk seriously without a medical diagnosis. I'm afraid my husband, while he is trying to be supportive at this point, will grow weary of all the things I no longer serve at meals and all the places we will no longer go to because there are not gluten free alternatives on the menu. A medical diagnosis would make it easier for him, long term, I think.  I don't have much faith in general in our western health care system. My mother died 6 months ago at age 82 after 4-5 years of many different health issues. She had given up the keys to her car in her late 70's after getting lost several times. I became her designated driver to all doctor appointments, procedures, hospital stays, etc. The incompetence and disregard I saw blew me away. I'm surprised any elderly people survive our health care system once they get on that revolving door. The reason I started seeing a naturopath is that I am looking for an alternative to medical doctors for most of my health issues as I age. I know there are some things I still have to see them for - and of course, they are essential in trauma and emergency situations. But I am on a quest to follow a more holistic approach to my health care. If this is the path I am choosing, then I have to follow my gut (no pun intended) in situations like this. I think the only reason I would go through the medical testing would be for other people - not me. It seems to me, that with so many people being gluten intolerant these days, a decent M.D. would listen to a patient that was adamant about their intent to live gluten free - positive celiac diagnosis or not (and especially with the gene and stool test results). I mean, they don't tell vegetarians they have to eat meat ... and vegetarianism is a personal choice. Sorry if I seem to be rambling ... this is all so new, and I'm trying to find my way.    
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,653
    • Most Online
      3,093

    Newest Member
    KerryO
    Joined