Negative Tests - Now What?

[travelmom]

After over a year of gastrointestinal problems, I asked my doctor to test me for celiacs. Both the antibody blood work and biopsy came back negative. I went gluten free as soon as the tests were complete two weeks ago, and I feel remarkably better. I plan to continue with the gluten free diet, but I'm deliberating whether I should pursue the diagnosis further. Could I have celiacs or a gluten allergy even if the tests are negative? I have many of the symptoms including teeth enamel problems, all the gastrointestinal issues, fatigue, family history of osteoporosis, muscle cramps, feeling foggy, and depression.

My biggest concern is the strong genetic component of this disease. If my children are genetically susceptible, I would like to put them on a gluten free diet before they start developing symptoms. Also, my older brother has unexplained peripheral neuropathy which I think maybe tied to celiacs.

I'd appreciate advice from anyone who has been through this before.

Thanks!

[Laurelf]

I'm still tryhing to figure this all out myself, but you can have gluten sensitivity without having celiac. There is a lab called enterolab in Texas where they can test for gluten sensitivity and also to see if you are carrying one of the celiac genes. My understading is that you can't have celiac without a gene but you can still have a gluten intolerance that might not affect your intestines as severely as celiac and thus give you a negative biopsy.

Also, a true gluten allergy is different from celiac and intolerance since with celiac they measure IgA antibodies and for food allergy, they measure IgE antibodies. The test for food allergies is called a RAST bloodtest, but my understanding is the symptoms of allergy are different from celiac -hives, etc, although allergies can give you digestive symptoms.

Good luck.

Laurel

[GFPamela]

I strongly feel that one can be gluten intolerant and be susceptible to many health problems and autoimmune diseases even after testing negative. I'm in the same boat and plan to eventually have genetic testing with Prometheus. That can give you a lot of info including if your children could be at risk. My advice to you or anyone, go gluten-free, be strict with the diet and, for those who have been gluten-free for some time, don't ever get talked in to a too short gluten challenge - a waste of time. My eyes are opening to see so many people suffering needlessly. Let's hope the professionals we have to deal with eventually understand the whole picture of gluten intolerance and the diseases that result from it.

[Swimmr]

My doc seemed to not really take it seriously when I mentioned Celiac. I was supposed to have a RAST test done to help figure out the cause of my sudden onset of panic attacks. At least that is what we think they are. I posted recently about the Reeses morsels and said that I reacted from it badly...then two days later I had a bad panic attack here at home that lasted almost an hour. I don't know if the two were related.

I too have been told and have read that an intolerance is separate from actual Celiac. I had bloodwork done too and it came back negative. My mother had bloodwork AND a biopsy and both came back negative. We both have been gluten free for a couple of years now and KNOW we have something going on. She is positive she has Celiac. I am certain I have at least an intolerance to gluten/wheat and iodized salts (sea salt). She said her doc told her to get a positive test she would have to knowingly ingest something she knows she shouldn't (like bread) and then redo the test. LOL neither one of us thinks a month of reactions will be worth confirming something we know we have.

My doctor is REALLY knowledgable, but I think him being SO busy is taking away from him remembering me and my issues when I go in to see him.

I have heart papitations (we think) and this weekend I've been out to eat twice and have experienced more palpitations than normal. When I went gluten free I noticed a significant drop in the occurrence of them, so I know that it has a dramatic effect.

[ggadwa]

I definitely don't want to hijack this thread....I just have some conflicting scenarios and I don't know quite where to go with this.

Born in 1947 and spent 5 years on a Banana only diet. I was said to have Celiac. I was even wrote up in the Tacoma Washington News Tribune as having eaten something like 17,000 bananas along with my younger brother then age 3. Dr. Nelson pronounced us "CURED" of Celiac then. I still have the Newspaper article. No surviving parents I can query!??!?!

I'm just turning 62 and have lived with Gastrointestinal "ISSUES" all my life (remember CURED). Well I just two weeks ago had this brainstorm after reading this and other Celiac Forums.....that I should get tested....Well, The local Physicians Assistant got the Blood Test back and said that they came back NEGATIVE?????

My wife and I have placed me on Gluten Free diet and I do feel better than I can even remember... in the Gut and below.....Confused....Should I have other tests or did I spend the first five years of my life so long ago with the wrong diagnosis.

Confused and frustrated,

GARY

[momxyz]

if it walks like a duck and quacks.... then its probably a duck.

The state of diagnostic testing is so far from perfect, whether you are talking about celiac's or non celiac gluten intolerance. My own take on the situation is, that while pursueing an "official" diagnosis may be worthwhile, the outcome of that may or may not be useful. If it is, great. If it's not.... and staying gluten free makes you feel better, then I think you should consider that you may have found your own answer.

[CHARBEEGOOD]

It is always a hard choice. Good luck feel better there are many of us that have had the same issues. It is scary but you have to make choices that help you feel better. I have had the same results as most posts here.

[DownWithGluten]

Hm wanting to be tested for your kid's sake is a good point.

And, you can get a genetic test for a celiac gene? Maybe at some point in my life I'll try that. I don't want kids, but just of curiosity.

My story is similar to many others', I'm sure. I suffered for years with GI problems too, getting gradually worse and worse. Went to doctors, had several tests (barium, blood, even had my stupid ovaries sonogrammed). They 'ruled out' celiac by the blood test. So, my blood test was negative. Crohn's was out, etc. So they threw me in the IBS bin blah blah. Anyway it was getting worse and worse as I said, and so I was getting at the end of my rope. Realizing that, I really was not going to look forward to life and being alive if I was going to keep having those frequent random bouts of digestive suffering that were steadily increasing. Feeling more and more hopeless about it...I thought it was butter, I thought it was grease, cheese...but when I was getting sick from even 'innocent' stuff like bald pasta (ha) I was just feeling so hopeless.

So I threw in the towel and thought I'd just try the gluten-free diet. And instantly the problems went away. I was uber-stressed during that time, which was almost always a guaranteed trigger for one of my 'attacks' during the gluten days. So I was pretty sure I'd have an attack...but nope, nothing. Not at all. So, I've never gone back to gluten since then. When I start feeling down about how constricting this stupid diet is, I remember how LIBERATING it is to be able to have CONTROL over it. Before I was just so helpless to those seemingly 'random' attacks.

Long story short. So yeah my blood test was negative. And after all the other failed tests and whatnot, I did not have the patience to wait for the biopsy. When I made the decision to try the diet, I was ready and not in the mood to see yet another doctor. I told my mom "You know what? I already know what's going to happen. I'm going to go and get the stupid biopsy, and they're going to tell me it's negative. And then I'm back to square one. So I don't want to waste the effort." So I didn't. I was just so fed up with getting nothing from the doctors and test, I felt, why do yet another. Forget that, I'm just going to do the diet.

*shrug* That was just my choice. I don't want kids though, so I was only thinking about my own self. I still am curious to know though...but I'll be damned if I'm going to suffer through eating gluten again just to get the biopsy. No. So maybe a gene test one day, if possible. Mostly I tell people I'm 'gluten-intolerant'....not Celiac, because I don't know for sure that I am. I do have hashimoto's thyroid too (another autoimmune).

This was long and arbitrary, sorry!