Sigh...more Questions Than Answers!

[lizzy59]

I am a fifty-two year old woman with rheumatoid arthritis, Type 1 Diabetes, and Grave's disease. As some may know, all of these conditions are autoimmune in nature. Because of this and some other health issues (osteopenia, migraines, alternating constipation and diarrhea), when I came across the subject of celiac disease in a book I was reading ("Wheat Belly" by Dr. William Davis), I was intrigued.

The more I researched the subject, the more I became convinced that this is what I suffer from...it was like a puzzle I'd never been able to put together suddenly fell into place!

I made an appointment with my nurse practitioner, who agreed to run some blood tests. They came back negative, but I've read about others who had to "fight" to get diagnosed, and I'm not sure what my next step should be. Of course, I can't say with certainty that I have celiac disease, it seems like this could be the common denominator I've been searching for..

I haven't tried going gluten-free, as I know it's not a good idea if you're trying to get diagnosed, but I've been reading books, reputable websites, and labels at the grocery store so that if I'm diagnosed, the learning curve won't be quite as steep, but I really want a diagnosis before cutting out gluten.

One final question: I've read that if one is on immunosuppressive drugs (as I am for rheumatoid arthritis), this can lead to "false negative" results on tests that detect celiac disease. Is this true? (It makes sense to me.) Has anyone else had experience with this?

Thanks to anyone out there who can offer some guidance, advice, or insight!

[Marilyn R]

Hi Lizzy,

I'm undiagnosed. If you want to get diagnosed, schedule an endoscopy. When you meet with the GI, ask him/her to take multiple biopsies. Reinforce that with the head nurse at the surgery center or hospital the day of the procedure, as well as with the GI. After the procedure, request copies of the radiology report from the GI office.

Eat the equivalent of five pieces of wheat bread everyday before the biopsy. (If you're due for a colonoscopy, you could knock that out at the same time.)

I've gently suggested the gluten-free diet to my girlfriend with severe RA a couple of times, and to another friend who has Diabetes. Neither one even got the blood test because they said their dr's said there was no reason to test for it because they don't have D. Duh.

Good luck, going gluten-free has been a lifesaver for me, hope it will be for you too!

[mushroom]

I am a fifty-two year old woman with rheumatoid arthritis, ......

One final question: I've read that if one is on immunosuppressive drugs (as I am for rheumatoid arthritis), this can lead to "false negative" results on tests that detect celiac disease. Is this true? (It makes sense to me.) Has anyone else had experience with this?

Thanks to anyone out there who can offer some guidance, advice, or insight!

I am a self-diagnosed celiac with psoriatic arthritis and am on Humira. I also have read that TNF-inhibitors can affect the results of celiac testing but a quick google search failed to bring anything up on cursory examination. Nevertheless, common sense (if there is any left) will tell you that something that suppresses inflammation is going to affect celiac disease which is also an autoimmune inflammatory response. I have no idea if it would affect the damage to the villi in the small intestine if you opt for a biopsy. But this would seem to be the last best avenue available to you for an official diagnosis before settling for the self-diagnosis and going gluten free.

[lizzy59]

Thanks so much for your responses.

Maybe I should add that the blood tests I had were Tissue Transglutaminase (value 1.2) and endomysial ABS, which was negative. Should I ask for additional tests? (I've read something about an "entire panel", but I'm not sure what that refers to.)

In addition to the three autoimmune diseases and the other conditions I mentioned above, I also have fatigue, anxiety, and dental problems.

I am considering getting the genetic testing done, but what configuration of the DQ2 and DQ8 genes means celiac is possible? (I know that if you have both of those genes, you could possibly have celiac disease, but what does it mean if you only have one and not the other?)

Thanks so much for any more information--I really appreciate it.

[mushroom]

The entire celiac panel that they talk about consists of the following tests:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

The last test is run as a control to make sure that you are a person who produces normal amounts of IgA. If this value is low, then they should run IgG versions of all the tests for a valid result. The "old school" considers the tTG to be the most specific, and also the EMA, but in the last few years they have been finding that the DGP is the most specific celiac test there is. But if your total serum IgA is low then none of your IgA results would be valid.

I can sort of understand your wanting an official diagnosis, but as a self-diagnosed myself, I see no official need for the piece of paper to make myself feel better and live a better life. If you can convince someone to do the complete testing on you, including the endoscopy with iopbsies, then go with it. If you can't, you can always try the most valid test of all - does it work???

[lizzy59]

Well, I see my nurse practioner tomorrow, and I'm going to hit her up for these other tests...thank you SO much for this information!! If she won't give me the tests, or they come back negative/inconclusive, then I'm just going to do it on my own. (A gluten-free diet that is.)

Will most doctors refer you for an upper-GI without these tests showing celiac disease?

Yes, I do want a diagnosis, if possible, because without one, how do you get seen by a GI doctor periodically to have your small intestine checked? (To make sure you're not being accidentally exposed to gluten, or to discover that you have refractive celiac disease?)

Another reason I want to know is for my neices and nephews...if I have celiac disease, my sister has agreed to get her children tested. (I don't have children.)

Well, wish me luck tomorrow! Again, I thank you for taking the time to reply--it's so appreciated!

[Marilyn R]

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Well, I see my nurse practioner tomorrow, and I'm going to hit her up for these other tests...thank you SO much for this information!! If she won't give me the tests, or they come back negative/inconclusive, then I'm just going to do it on my own. (A gluten-free diet that is.)

Will most doctors refer you for an upper-GI without these tests showing celiac disease?

Yes, I do want a diagnosis, if possible, because without one, how do you get seen by a GI doctor periodically to have your small intestine checked? (To make sure you're not being accidentally exposed to gluten, or to discover that you have refractive celiac disease?)

Another reason I want to know is for my neices and nephews...if I have celiac disease, my sister has agreed to get her children tested. (I don't have children.)

Well, wish me luck tomorrow! Again, I thank you for taking the time to reply--it's so appreciated!

I wish you good luck. Thus far, I have resisted genetic testing even though my neurologist has pushed for it. My mom was positively diagnosed. I don't have children but have a whole slew of nieces and nephews. I've made my siblings aware of the situation in writing and face to face. It's in their hands now.

Regarding seeing a GI doctor regularly, most insurance companies approve of a GI visit every 5-10 years based on colonoscopy results after the age of 50. With your other symptoms, you're warranted extra visits. My GI wanted to see me more often than I wanted to see him, because my GI issues resolved going gluten-free (as did Neuro), and even though I don't have great insurance, I don't have an HMO. I hope you find positive improvement going gluten-free.

[lizzy59]

Thanks so much for the well-wishes, Marilyn--I so appreciate your input!

I am curious about something...as I said in my first post, I began this journey by reading about celiac in a book called "Wheat Belly", and the preventive cardiologist who wrote it says that wheat is no longer fit for anyone to eat, because of all of the hybridization and genetic tinkering that's gone on with it. (I do realize that gluten is the offender here, not simply wheat, but that's what this book was about.)

If he's right, virtually everyone would see some improvement by giving up wheat, whether or not one has celiac disease. This is another reason I'd like a diagnosis...if I don't have celiac disease, then I'd still go largely gluten-free, but if I wanted an occasional treat like pizza or birthday cake, I'd have it. In addition, I wouldn't be as concerned about cross-contamination.

If, however, I had a celiac disease diagnosis, I would realize that I need to be ever-vigilant and strict about avoiding gluten. I mean, the difference between those two scenarios is huge, and so to me, a diagnosis is very important.

I admire those of you who stick to the diet without a diagnosis, but I would feel better with one. Like I said before, though, if my nurse practitioner won't run the tests, or she agrees and they don't show celiac disease, then I want to try gluten-free for a period of six months to see what improvements I can achieve.

For those riveted by my story, I will report back tomorrow after my appointment.

[Michelle1234]

This is the test my Dr. did. You basically collect a stool sample at home and send it in.

Open Original Shared Link

You can read their info and see if it makes sense to you. A quote from the web site:

"EnteroLab has developed a unique screening test for gluten sensitivity, as well as for many other antigenic food sensitivities, that is more sensitive and specific than tests in current use (U.S. and International patents issued). Our method utilizes stool rather than blood as the testing substrate; the rationale of using stool rather than blood for testing for food sensitivity is that immunologic reactions to proteins in the diet that cause these reactions are centered within the intestinal tract and not in the blood. "

Their FAQ section talks in more detail about how blood vs. stool testing is different and can have different results.

Michelle

[lizzy59]

Thanks so much for the info on Enterolab, Michelle--I appreciate it!! I think I will go that route in the event my nurse practitioner doesn't agree to the tests.

I did see her today, and I had typed up a list of my symptoms, along with the name of the two tests she had already run that came up negative. I then had included the names of all the tests recommended by Mushroom above.

She told me that she "understood" me wanting the tests, but that they were very expensive. (Why does she care? I'm paying the bill! Besides, I think being celiac and not knowing would be "expensive" to my health!) Anyway, she asked me if she could keep the paper, and she's going to discuss it with a local gastroenterologist. (I've seen him a few times in the past for other things, and like him.)

Anyway, she's going to call me and let me know what he says, and I guess if he agrees, we'll go forward with the testing.

If he doesn't think further testing is worthwhile (shouldn't that be MY choice?!), I think that at that point I would do the stool test, and maybe even the genetic test. I want to do all the testing I can do before I go gluten-free, because if it works for me, I don't want to go through doing a gluten challenge for further testing.

I know I could do the genetic test at any time, but I may as well do it right away if the gastroenterologist doesn't think the other tests are warranted. If I don't have either of the genes for celiac disease, it would be kind of pointless for me to do the gluten-free trial,

Thanks again for the great info!!

[nora-n]

It is known that cortisone and the like are famous for making the blood tests AND biopsies negative for celiac.

They use steroids for those with a severe form of celiac and that often helps.

So maybe the immune suppressants can make the signs of celiac more obscure? I do not know.

this would be a good question for experts.

Those interpreting the biopsies must know about your medicines in order to interpret them right, I think.

[lizzy59]

Thanks for the reply and information, Nora!

On that paper that I had typed up (the one I gave to my nurse practitioner that she said she'd forward to the gastroenterologist), I included the question "Would the fact that I take two immunosuppressive drugs for RA influence the test results for celiac disease?".

Although the N.P. never said anything about it, I hope if the G.I. doc agrees to further testing, he would take that into account. I will be sure to ask him again in the face-to-face appointment, if I'm "granted" one.

Otherwise, I'll probably go ahead and do the genetic testing and, depending on the results, the stool testing as well. Is that stool testing really reliable? If I test positive on that, can I list celiac disease as a diagnosis whenever I'm asked health information?

The N.P. is supposed to call me this week to let me know if/how the G.I. doctor thinks we should proceed. I'm worried now that I'll spend a lot for all of this testing, only to get a negative result that I can't "trust" because of the meds I'm on.

Maybe I should go ahead with the genetic test first--at least then I'd know if it's even possible that I have celiac disease...no DQ2 and no DQ8 would mean I can't have the disease, right?

Thanks in advance for any more info!

[nora-n]

I have two DQ5, and there have been several others here with the wrong genes, and several with half genes.

There is no stool test for celiac, but enterolab.com has a stool test for gluten sensitivity and you can order that yourself, together with the HLA DQ test.

[lizzy59]

Thanks for the additional info, Nora!

I guess that bursts my bubble of getting somewhere with the genetic test, since it can only tell me which genes I have, but can't rule celiac disease in or out...seems to be of very limited usefulness.

So...genetic test not really helpful, other tests expensive and not terribly useful since I'm on immunosuppressive therapies for RA. I guess all that leaves me is the elimination diet, huh?