Possible celiac or gluten intolerant...advice appreciated!

[Kind_Karma]

So I actually went to a doctor, which is rare for me. I lost about 30 lbs.(6'1", now 139 lbs) in about 4 months and my stomach was hurting whenever I ate. At the beginning of the 4 months, my stomach would hurt at the end of the meal and I'd have gas, then when I went to doctor after 4 months, my stomach would hurt really bad during the meal, along with really bad gas.

I did some stool, urine and blood tests. The stool and urine didn't show anything abnormal. The blood test showed that my amalyse was very high and my TSH was low. The doc thought that it was either pancreas or thyroid. I did an ultrasound that was okay and did a CAT scan that showed that my pancreas was not inflamed, but showed that my lower intestine was flattened and that it was smooth, instead of the villi. He put me on digestive enzymes, which has allowed me to finish a meal, without severe pain...sometimes with pain, still gassy, no weight gain.

So the doc and I thought it could be celiac disease. He had me take a food allergy and celiac disease blood test and referred me to a gastro. The blood test said no celiac disease, but showed moderate allergy to peanuts. The gastro wants to do an endoscopy with small biopsy. I think I could be celiac or gluten intolerant, because of multiple current symptoms: weight loss, lower abdominal pain, hard lower stomach, bad gas, achiness, headaches, joint pains, fatigue and overall weakness.

I asked my doctor if I should do a GF diet and peanut free for 2-3 weeks, then meet with him to see how I feel. Is this a good idea, or is it better to do the endoscopy with biopsy to get an "official word", even though it may not show a possible gluten intolerance?

Any correlation between celiac and sinus problems? Wondering if GF diet helps sinus problems?

sorry so long, I used to be a healthy athlete and now it seems like I'm falling apart...thanks and peace.

[mrsppmrxky]

Sorry you are so sick! Sinus problems do see to be showing up a lot with gluten problems.

Do you 'need' to have an official diagnosis? If so, then you have to be on gluten to do the biopsy test. If you are okay with trying the diet to see if you are better, then you don't have to wait for permission.

My DD responded within 10 days on the diet. Not everyone responds so quickly, so you have to have patience. It sounds like you have lots of damage, so it will take time to respond, but even longer to get well.

You sound like a classic case. Since your gut is so flattened, you might find that milk (casien) needs to be eliminated for a while as well as the wheat, barley, rye and oats.

Hope you feel better.
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[aklap]

Hi Kind,

Welcome to the board!! Sorry to hear your not feeling well. It does sound like you are on the right track tho! All the symptoms you have can be assoc with CD. When I was sick, I had slightly high amalyse levels. I have not had it checked since.

There are significant connections to CD and thyroid...so that TSH test may be an important clue. Don't let that slip by you or your doc. Many times Docs will only check the TSH and not do the T3, T4 checks. If you poke around the Diagnostic Forums you'll see some thyroid posts out there.

I agree with MrsP on the "offical" dx. If you feel you really need one...try to stay on gluten until all Celiac Blood Panel & and biopsy work is done. If you stop gluten now, you'll have to go back on when you do the tests. For those that have stopped and started again (I was one), they don't feel it's worth it. It's a difficult decision to make. I tried to go back on gluten full time for the tests, but had to call it off. It was at that point I had my answer. I need to test no further.

Testing is not alway cut and dried either. I had the blood work (however I was GF at the time and it was done w/o my knowledge), and the biospy. Both came back negative. The Gastro said I don't have CD. But going GF is the only thing that solved almost all of my problems!! So, as you can see, many of us are in the "Grey Zone". All the tests say NO CD (I'm not getting into the Gluten Sensitivity because most docs don't recognize it), but yet you still feel like cr@p. There comes a point in time that you have to listen to your body. If you find that going GF helps you...I think you need to heed that message. Regardless of what all the medical tests say - if you feel better GF - go for it!! People go on diets for all sorts of reasons - I can't think of a better reason.

CD and sinus problems? Yes there is a connection. There is also a connection to diary too. Sinus problems can go away once dairy is removed.

Hang in there! Keep researching. You are the only one that is going to look out for you. Read and learn as much as you can. As I said, I think you are on the right track!

Don't be afraid to ask more questions!!

More info for you:

CD Testing: http://www.celiacforums.com/viewtopic.php?t=61
CD Symptoms: http://www.celiacforums.com/viewtopic.php?t=61
Our Path's to Gluten Free-dom Thread - Stories on how & why we are GF. Seeing others stories is what made me decide to try the GF diet. I think they are very valuable.
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[Kind_Karma]

Hey,
Thanks for the replies. I forgot to add that my celiac blood test came back negative, only thing that showed up was the moderate allergy to peanuts. Also, on my CAT scan, it showed that my small intestine tube was flattened and that there were no villi, but smooth instead.
Which brings me to a couple of questions:
1.) Are there other things besides celiac that causes villi damage?
2.) Is it only gluten or is it also wheat allergy that can villi damage?

I'm very glad that I have stumbled upon this forum and that there's so much information on the Internet. It's weird to be young, eat well and be in shape, but still feel that my health is deteriorating.

Thanks again and peace.

[aklap]

Hi Kind,

Yes there are other foods that can cause villi damage. Here's one link. There might be another at Braintalk, but I need to find it.

http://brain.hastypastry.net/forums/showthread.php?t=3332&highlight=villi

Do you know what celiac blood work was done? It's best to have the entire panel done. One of those links above listed the entire panel. Most docs will only the the tTg test - the latest and greatest test for CD. The problem with that is it only detects villi damage. This is great if you truly have CD & the villi are really damaged. But those of us in the "Grey Zone" don't meet that criteria.

Two of the tests in the CD panel will look for antigliadin antibodies (IgA, IgG) that will help detect a gluten sensitivity. As I said before, GS is not some that most Docs know about (heck, they have a hard time with CD), or even believe in. But those us that have gone thru all the tests and have been officially dx'ed with NO CD - we still struggle with all the problems and no one to help us. Slowly that is changing!! Partly because of forums like this. The more people know about this stuff, the better they will be. I have always said..."Knowledge is Health". I have some more links, but I'm at work and have to physically look them (at home I have them in a sticky note and I can copy and paste).

Here are the 2 I was talking about...
Early Diagnosis - Before the villi are gone


CD vs Gluten Sensitivity - What's the Difference


This may explain why the doctors say "You don't have CD" and yet you feel bad.
http://www.gluten.net/downloads/infopackets/GlutenIntolnotCD.pdf

Good luck in your Knowledge Quest!! I hope you get back what you have been loosing!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[Kind_Karma]

Thanks for the links, I checked them out.
So what do you think if I go a couple of days GF, could that affect a endoscopy with biopsy?


Thanks and peace.

[aklap]

Hi,

A couple of days? No, probably not. In those couple of days, you might actually notice some improvements - if might be some indiction what you need to do. Some people notice changes right away...others need serveral weeks or months to see any changes.

I personally think a GF trial can tell you a lot - but - it's a double edge sword as I mentioned before. You go off...then you have to go back on for testing. It's a tough personal choice.

If you're curious about what the GF diet entails, checkout Our Thread on GF Diet Boot Camp.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[Jeannine]

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