Curious and Determined

Sorry to get angry. I have to look on the bright side at what I've accomplished. I was on Nexium and my stomach was still waking me up at night, and I kicked that by cutting back on the carbs and sugars, as well as the gluten. It's just that this irregular heart scares me, and I'm not sure what's causing it. I'd like to blame it on that half pancake, but I'm not sure I can. 36 hours is a long time.

So JayhawkMom, you have no external symptoms. How do you know what's happening internally? How can you keep motivated to stick to this diet when there's not a predictable, tangible reward? I feel like I'm grasping at straws, not knowing what's causing what in my body. Last night I couldn't get to sleep because my heart was pounding and skipping beats. Was it that half pancake 36 hours earlier? Was it the ice cream I had before I went to bed? I had diarrhea this morning. Is that associated with my skipping heart last night? I'm a logical thinking programmer, and I get so frustrated when I can't see the pattern in what's going on...

I've been gluten free (for the most part) for a little over two months. I'm positive by Enterolab, negative by three docs, so I get surly and "test the waters" now and then. I was feeling frisky Monday morning and ate a half of a pancake at Denny's. Question - if you were having a reaction because of gluten, how long would you have expected before you noticed a problem? Immediately? within 24 hours? within 48 hours?

Well, I shouldn't be surprised. I had my endoscopy follow up today. The small bowel biopsies did not show any villi damage. So the PA at the GI office summed it up very quaintly by saying, "It's an awfully hard diet to follow. You can be glad you can eat all the gluten you want!" So my GI says no celiac, my GP says no celiac, only my neurologist who handed me my negative blood test results says "it's worth trying a gluten free diet - see what happens". Aaarrrrrgghh!! I have the positive Enterolab results, me, myself, and I, and all you supportive folks out there. The endoscopy photos show a lot of general inflammation in the stomach and duodenum. Has anyone had such general inflammation go away after a gluten free diet? That darn stomach wakes me up every night aroun 1 am when it gets empty - I'd love to be rid of that problem!

I just had an endoscopy procedure this morning, and it looks like several things going on "down there". I was out of it, but the written report says: - My GI doc found possible Barrett's esophagus and took two biopsies. - There was evidence of gastritis of the antrum, mucosa appeared erythematous (does that mean inflammation in the lower stomach?). She took two biopsies from that area. - Three small polyps were removed from the fundus (upper stomach?) - I have a hiatal hernia - Duodenitits of the duodenal bulb, mucosa erythematous (more inflamation). - She mentions surveillance biopsies from the small bowel. Can any of these issues be caused by Celiac disease? or do I have something else going on to cause inflammation?

I had some blood tests done by my neurologist too, and I had one questiion maybe someone can answer about my results: Immunoglobulin A was high at 328 (normal 70 to 312) Endomysial Ab, IgA Screen was 0.6 with no normal range given Endomysial Ab, IgA Titer said "not done" Why would they do that? Is there some sort of protocol whereby you don't do every test ordered? Do these results correlate with Enterolab?

The tests for milk, eggs. and yeast were in the normal range, 9, 6, and 7 respectively. Not what you'd call low, but under 10. You're right - if I just concentrate on fresh foods I'll get there. Thanks! I think back to when we lived on an acreage in Nebraska. I lost quite a bit of weight after moving out there. At the time I thought it was just the additional exercise, but now I'm wondering if it was all the wheat and bean dust in the air. If you have a food intolerance, might you have the same problem breathing the dust? We've been in Texas now for three years, and my symptoms have leveled off. There's obviously not much grain dust in the air down on the Gulf coast.

I received my EnteroLab results today, and wasn't surprised to find I was gluten intolerant and that I carry both sets of Celiac genes. Fecal Antigliadin IgA 14 (Normal Range <10 Units) Fecal Antitissue Transglutaminase IgA 11 Units (Normal Range <10 Units) Serologic equivalent: HLA-DQ 2,2 (Subtype 2,2) At first I was surprised that my numbers were so close to 10, but when I read others' results, many of you are around 14 or 15. What really took me off guard was that I need to eliminate soy as well! Fecal Anti-Soy IgA 13 Units (Normal Range <10 Units) I've been reading up on gluten free diets the past few weeks, and I was prepared for that. But I don't see as many resources to help with a soy free diet. And soy is everywhere! I need some direction...

Is there harm in trying a B-12 shot for persistent feet tingling if it appears you're OK? Neurologists haven't come up with anything else causing it. B-12 570 (180 - 914) Homocysteine 12.3 (3.7 - 13.9) Methylmalonic acid <0.1 (0 - .4) Gliad ABS, IgA/IgG showing: IgG was 7.0 with 25 or less negative IgA was 35.8, with 30 or greater positive (awaiting more celiac test results from neurologist and Enterolab)

My neurologist checked for B-12, and it looked OK, or what do you think? I have a daughter with Hashimoto's, so I check that often. My TSH is getting lower than ever, but my T3 and T4 are OK. B-12 570 (180 - 914) Homocysteine 12.3 (3.7 - 13.9) Methylmalonic acid <0.1 (0 - .4) Ferritin serum 186 (11 - 307) TSH .8 (.35 - 5.5) T3 125 (60 - 181) Free T4 1.38 (.89 - 1.76)

Here's the topic I've been looking for! I was diagnosed with Parkinson's in 1999, but it has progressed so slowly that my latest neurologist is calling it Parkinsonism (PD symptoms, but caused by something else), and another is calling it Stiff Man Syndrome. I have a lot of tingling in my feet. They've called it Restless Legs syndrome, but I didn't buy that. I've always had normal MRIs, except for some unexplained "scattered punctate foci of T2 hyperintensity in the subcortical white matter of the right frontal lobe", some of which were there in 1999 when this all began. I've been getting tired of diagnoses that were really symptoms and garbage can diagnoses - what is left after you rule everything else out. I first had neurological symptoms in 1998 after a bout of pneumonia. I had pains in one hip that would shoot down that leg. After that I walked with a limp and held my left arm stiffly. My left hand was slower than my right. Things stayed on an even keel for a few years. Then in late 2002 I had Morton's Neuroma surgery on one foot. It's like my body went bonkers! I was extremely weak, had unexplainable feelings in my chest and stomach (likely GERD and ulcer symptoms from too much Aleve), had super-sensory experiences, and my feet were freezing, flushing, and tingling like crazy, my legs were burning with a sunburned-like rash for a few days. I couldn't tolerate shoes at all, which looks a little silly in the snow. Four years later and a convenient move to the Gulf Coast, I was progressively feeling better, much to confound every new neurologist I met. Except my GERD symptoms were gettting worse. January of 2006 I took a round of antibiotics with Nexium for H Pylori, and lost 15 pounds with a low carb, unknowingly low gluten diet. I was feeling good and looking not too bad for a 54 year old. Of course I had incentive, my daughter was married in July. Also in July, my neurologist did some blood tests, and she told me at a recent appointment that I may be sensitive to gluten. I recently got a copy of the lab results, and found that two tests referring to IgA were high. One was Gliad ABS, IgA/IgG showing: IgG was 7.0 with 25 or less negative IgA was 35.8, with 30 or greater positive. Then there was another test called Immunoelectrophoresis SER+URIN which listed: T protein 7.6 (6.3 - 8.2) Albumin 4.4 (3.5 - 5.0) IgG 770 (636 - 1600) IgA 327 (70 - 312) IgM 116 (56 - 352) This was after my dieting for a five months. Since then, I've been googling and reading through forums, and decided to increase my bread and crackers as in pre-diet days, just to see what happened. I put on 8 pounds quicker than you can imagine, my stomach would wake me up churning at night, and my back got quite a bit stiffer and my foot and leg tingling got worse. I woke with puffy lips and cheeks and dry eyes. Anyone else have these symptoms? I just ordered some Enterolab tests. As soon as I send that off, I'm going through the pantry and giving away anything that looks remotely "gluten"ous. Man, I hate to think of watching what I eat over the holidays, but I want to give this a fair shot. I don't even know any of you, but you're an inspiring bunch. Thanks!

My son-in-law is from McPherson, and he and my daughter met at K-State. And you're from wheat country! I'm a relatively new Texas resident, raised in Iowa, lived in Nebraska.