Biop Says Neg For Celiac - I'm At A Loss...

[Dilbert]

Hi, this is my first post. I'm posting here out of desperation cause I haven't felt good since the beginning of Dec, and I'm having no luck getting answers from my primary care physician. My symptoms started with a general change in my bowel habits (loose and yellowish stools) and pain in my abdomen. I'm 40yrs old, 6'-2", and used to weigh 197lbs. I've since lost 15lbs without trying.

Back when I first started to feel sick, I thought it may have been a colon issue (my uncle had polyps removed as well as part of his colon last year, and I later found out there was history of colon issues on that side of my family). I underwent a colonoscopy and endoscopy and everything came back normal. They performed a biopsy of my stomach and duodenum and tested for h.pylori and celiac disease, but the results were neg for both. I've had blood tests done inluding thyroid/amylase/lipase and all have come back negative. My Dr has basically said that medically he doesn't see anything wrong with me and that he doesnt recommend any further testing.

I have times when I feel like I've turned the corner with whatever I have, only to have that sick feeling come back again. I'm at my wits end. My appetite lately is borderline ok - I feel as though I have to eat alot just so I can gain some weight. I feel like I'm losing this battle though and I'm slowly wasting away. My other symptoms are restlessness at night - I often wake up around 2-3am feeling fullness in my abdomen (sometimes I try to have a BM to try and alleviate it), have chills, and find it hard to go back asleep (I keep feeling my heart beat and start thinking of how uncomfortable I feel). I used to sleep soundly - now I'm up early cause I can't sleep.

I have lower abdominal pain (just left of my belly button, that at times moves lower to my groin area) that usually comes about an hour or so after I eat, so I'm pretty sure its something to do with my abdomen during digestion. I usually feel crappiest most in the mornings. I often times feel a little dizzy, and have lack of energy. I find at times hard to concentrate on my work. I've had strange headaches - not migranes, just annoying pain from the top of my head down to my temples.

I'm posting hear cause it seems to me that celiac disease may be something I might be experiencing after all. Could I have it even though I tested negative during my endoscopy biopsy? Is it worth it to get a one of these genetic tests done (Enterlab/MyCeliacId) to see if I'm even predisposed to getting celiac? Is there anything my GI dr can do to determine if I have it, other than what he's done already? If I start a gluten free diet now, will it affect any tests he can do in the future?

My only worry about starting the Gluten-free diet is losing more weight than I already have. Have any of you lost alot of weight due to Celiac, only to have gained some weight back while on the gluten free diet? Are there any books you guys can recommend about what sort of foods I should eat or meals I can prepare?

I don't know what else to do - the weight loss and the way I feel has just been consuming me. I have two little kids and a very loving wife and I'm constantly wondering if I have cancer or something. I don't want to 'wait it out' like my Dr suggests. I just want my life back. I feel so scared about going through this - something I can't get answers for. I now its dumb to say, but I hope I find that it is Celiac disease thats been affecting me this way so at least I can move fwd with trying to do something about it.

Thanks for listening.

[starrytrekchic]

Have you had the blood test for celiac? If not, take that.

You know better than your doctor when something's wrong. If the blood test for celiac comes back negative, you can still try the gluten free diet for a few months, but on the chance something's seriously wrong, you need to keep pushing your doctor for more testing in the meantime. If he doesn't want to do anything more, you may have to get another opinion.

[CathyG]

My biopsies and blood test came back negative too. My doctor did see some inflammation in my small intestine and said that it could be a sign of early stage celiacs. He said that it could be due to a few things, but the possibility of at least a gluten sensitivity was quite high.

I've been told to go on a gluten free diet for 6 months and have another endoscopy to see if it's made a difference. Since going gluten free (only 2 weeks) I have noticed a few things start to get better, so even if I'm not technically a celiac, I definitely have some issue with gluten and am happy to stay on this diet. I'm sure it'll take quite some time to resolve all of my issues, but there is definitely small progress.

It might be worth asking your doctor if they found any increase in lymphocytes in the small intestine.

[mushroom]

There is a 20% false negative rate on both blood and biopsy testing for celiac disease, unfortunately. Now that you have had the negative test results it is time to give the diet a really strict three-month trial to see if gluten actually is causing your problem.

You could have latent celiac disease (a celiac in waiting so to speak, meaning that the damage and the antibodies have not accumulated sufficiently to satisfy the testing) or you could be a non-celiac gluten intolerant, of which there are possibly more than actual celiacs. Most doctors seem to believe that if you test negative for celiac you should not worry about gluten, but gluten can cause just as much damage to non-celiacs as it does to celiacs. Do you really want to carry on damaging your body and feeling miserable just so you can "pass" some medical test that tells you how much damage you have done?

Is there anything my GI dr can do to determine if I have it, other than what he's done already? If I start a gluten free diet now, will it affect any tests he can do in the future?

No, there is no further testing available to verify celiac disease. And yes, eating gluten free will guarantee (if you do a good job of it) that future testing is negative, which would be the goal of eating gluten free. If you wanted to be tested after being gluten free you would need to do a gluten challenge for two to three months of the equivalent of 3/4 slices of bread a day to guarantee sufficient antibodies in the bloodstream and damage to the small intestine for testing purposes.

It is always possible to do the genetic testing at any time, but most labs test only for the two most common genes DQ2 and DQ8, while many other genes are now associated with celiac disease and gluten intolerance. And it does not tell you whether or not you have it, only that you have a predisposition toward it. IMO it is really only useful in testing a family to see if they all have the same predisposing gene and to help watch out for symptoms in children.

But don't feel like you are alone in this - probably 25-50% of the people on this board are in the same boat pulling the same oars

The decision of how you wish to handle this information and/or where else you want to turn for help is entirely yours. We are here to offer support, answer questions, give advice (!) even though it may not be what you wish to hear.

You are unlikely to loose more weight once you go on the diet; in fact, the opposite is more likely true. Your body has been starved of nutrients and you will probably feel incessantly hungry for quite a while.until your body can gain back what it has lost due to the effects of gluten. I do believe you are much, much more likely to have gluten intolerance than to have cancer, although if you continue to consume gluten you could be setting yourself up for colon cancer as I believe a link has been established between the two (cannot fish out a citation for you right this moment).

If I were you, I would go gluten free today.

P.S. Do some reading at celiac.com and in the threads on this forum and you will learn lots about eating gluten free.

[tarnalberry]

Your symptoms have a significant overlap with reactive hypiglycemia. You may want to look into that, and try those dietary modifications as well.

[frieze]

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[Happyw5]

My tests came back neg for celiac. I am trying the diet and have been off gluten for 3 weeks. I am feeling better, not everything is perfect, but each day it's getting better. I can actaully stay awake after 8:00 and my insomnia is getting better. Digestively it has been an incredible turn around. I think for me the best way to go about it was knowing this is only a trial. If this isn't it I can go back to eating gluten... And if it is, then I won't want to go back to gluten... Good luck!!!

[okieinalaska]

So far I haven't lost any weight either before or after diagnosis. (But I have felt a whole lot better since going gluten-free!) There is plenty of stuff to eat, it's just figuring it out and planning. : ) And when I crave certain foods I can usually find the gluten-free version.

My blook word was positive. My GI doc was willing to diagnos me even if my endo came back negative, if I tried the diet and symptoms went away. You might as your doc about that.

[Marlie]

Blood testing for Celiac Disease has false negatives. I'm not implying you have Celiac Disease but you do need to keep that in the back of your mind as you look into other possible medical reasons for your problems.

I can say the initial celiac test my daughter had was negative, then another doctor ran the panel with two additional tests and it was only then she had positive blood results with those and the other tests still remained negative. I would review what tests your doctor performed as there are multiple tests.

30% of the population has the genetic markers for Celiac Disease. Fortunately, for us my daughter only had the genetic testing done after the biopsy (which was positive) since the genetic testing was negative.

Did they specifically take multiple biopsy's of the small intestine for Celiac Disease that showed up negative? If your biopsy and blood work were all negative, you could always try the gluten free diet and see if it resolves your symptoms while you look at other possible causes. There are many individuals who are Gluten Intolerant but do not have Celiac Disease but follow the same diet.

Hope you can figure this out and feel better.