I am not gluten intolerant

coryhub · Post by **coryhub** » Fri Jul 29, 2011 2:14 pm

Hi Guys and Gals,
I phoned my health benefits today to see if the gluten-intolerance test was covered. They said, call your doctor's office to get the code for the test and call us back. My doctor said, he already gave me the gluten test back in January when he first thought I had celiac disease. He chuckled and said, save your money and have a good weekend. I will still eat all the gluten-free products I recently invested in, but the question is, what now? Try to cut out diary? Keep only eating off my "safe foods" list? Something is seriously wrong with my digestion and my tummy. My entocorte pills run out in 5 days and I can't afford nor do I want to continue them. I guess I'm happy to not be gluten intolerant but I am also disappointed because I have lost that hope that something was going to help me.

dgshelton · Post by **dgshelton** » Fri Jul 29, 2011 2:29 pm

Corygut - We have all at one time or another been told that we are not gluten intolerant. Most GI's don't believe there is such a thing as gluten intolerance. So more than likely you tested negative for celiac and that's what your GI is basing his diagnosis on. I too was negative for celiac, but thru Enterolab found that I am producing extremely high antibodies to gluten and also have a gene for celiac. I wouldn't rely on your GI's diagnosis.

Hugs,

Post by **tex** » Fri Jul 29, 2011 2:33 pm

Cory,

Denise is right, of course. I'm sorry to have to inform you that your doctor's test is as worthless as the paper that it's printed on, as far as your case is concerned. That test only apples to someone with fully-developed celiac disease, and all of us here, (except for the members who also have fully-developed celiac disease), always test negative to those blood tests. They are so insensitive that many people have to be symptomatic for at least 3 or 4 years, before those tests will show a positive result. That's why we use the stool tests at Enterolab - they will detect gluten antibodies several years before antibodies begin to show up in the blood in numbers high enough to indicate a positive test result.

Despite what your uninformed doctor says, if you want to control your MC symptoms, without relying on Entocort, then you need to completely eliminate gluten, (and probably dairy and soy), from your diet - that's really the only practical option available to you, other than meds. Obviously, your doctor's knowledge of MC is very, very inadequate.

Tex

coryhub · Post by **coryhub** » Fri Jul 29, 2011 3:40 pm

Thanks Denise & Tex
You give me new hope that an elimination diet can still help. I was starting to wonder if my GI could be wrong because the few Gluten free items I'm eating seem to be helping. With your "tummy-on" experience I value your advise more than my GI's. I'm going to keep on with the elimination diet.

JLH · Post by **JLH** » Fri Jul 29, 2011 3:46 pm

Post by **tex** » Fri Jul 29, 2011 5:50 pm

Cory,

What your doctor meant to say, was that you do not have celiac sprue, (at least, not yet), but he is probably unaware that non-celiac gluten-sensitivity is rather common, and those blood tests will not detect non-celiac gluten-sensitivity. I didn't mean to infer that he knows nothing about celiac disease, but he does need to update his training on the gluten-sensitivity spectrum.

Tex

sarkin · Post by **sarkin** » Fri Jul 29, 2011 7:57 pm

Cory,

This must be so confusing. I have to agree with your 'gut' - if GF is making you feel better, it seems likely that you are sensitive to gluten... and to maximize your success when you discontinue the Entocort, I would temporarily cut out dairy as well, just because it's the likeliest intolerance to be lurking, and you might as well wait to figure that out till you're a little farther along in healing.

That was my approach and it was definitely the right answer for me. I think a short course of Entocort is a golden opportunity to get your elimination diet off on the right foot, by getting all the "usual suspects" out of your diet. I have been working to tame my MC with diet alone, brief use of Pepto, and Enterolab testing. It's going pretty well, but I can imagine that a little Enterolab during the darkest days would have been very encouraging.

It's actually VERY good news that you do not have celiac sprue. Along with that diagnosis would come a lot of additional risk for autoimmune conditions, malabsorption of nutrients, etc. PHEW.

Hang in there,

Sara

Joefnh · Post by **Joefnh** » Sun Jul 31, 2011 9:13 am

Hi Cory that's great news that celiac was negative, that would be a whole additional layer of issues to deal with. Like you I tested negative for celiac both by blood test and biopsy during an endoscope. With that I cannot have any gluten as gluten =D.

It's funny that I now have run into 3 people at work who are finding gluten an issue that tested negative for celiac sprue. Gluten intolerance seems to be more and more prevalent it seems.

Most doctors still do not recognize gluten intolerance my first GI doc did not but am fortunate that my second GI doc does recognize it but I can tell it's a new concept for him.

Good luck in finding the path that works for you the best

Joe

coryhub · Post by **coryhub** » Mon Aug 01, 2011 9:41 am

Thanks friends. I had a comfortable weekend and today was my last entocorte pill. I stuck with the gluten-free all weekend but the dairy reduction is a little harder. Hope I can get the dairy thing together because I did blow it this weekend with some yogurt. No ill effect but that was likely due to the entocorte. My favorite thing this weekend was some guacamole mushed up and eaten with gluten-free crackers. I'm losing weight even though I'm eating lots of small meals. Is this usual?

Post by **tex** » Mon Aug 01, 2011 10:33 am

Cory wrote:I'm losing weight even though I'm eating lots of small meals. Is this usual?

Yes. That's true for many of us. After your intestines make some progress healing, you will be better able to absorb nutrients, and you will be able to gain weight back. Grains are very fattening. When we cut out wheat, rye, barley, and oats, if we don't replace them with corn, rice, or some other substitute source of carbohydrates, we will naturally lose weight, due to the reduction of carbohydrates in our diet.

Tex

sarkin · Post by **sarkin** » Mon Aug 01, 2011 10:51 am

I lost weight in a bad way at first, very quickly (about a pound a day for about a week), and was dehydrated... and then when I got my diet and symptoms under control, I lost a few more pounds. I would guess that during that slow additional losing of a few pounds I also regained some of the 'bad' weight loss - I certainly regained lost muscle. I definitely had some excess gluten pounds, due to bloat and the blood-sugar disaster that a grain-heavy diet can cause, as Tex mentioned.

I feel lucky that my weight never slipped below a healthy threshhold. Do pay attention to staying hydrated, in this post-Entocort phase of healing, and best of luck,

Sara

Zizzle · Post by **Zizzle** » Mon Aug 01, 2011 10:56 am

I lost 8 lbs in the first 2 months on the GF/DF diet, mostly because I was eating less. I am at a healthy weight and happy to be staying there. I was one to pig out on junk food if it was in front of me, so the willpower required to not indulge keeps the weight off.