My doctor sent me for Celiac blood testing after she heard that unexplained low blood iron could be caused by Celiac Disease. The test came back borderline so I was then sent for a scope/biopsy (down the throat). The first one came back negative but when my specialist's partner was doing a second colonoscopy (family history of colon cancer and the first one I was "cleaned out" enough) he suggested a second biopsy for Celiac because it was unusual for a negative test after the positive blood test. The second time it came back positive (I had been eating more gluten prior to the second test). I was shocked. When I look back at other symptoms, I realize that when I do get "glutened" I get achy muscles, tired, grumpy, etc. Not the typical symptoms.
I was having trouble losing weight, So i saw a new doc. naturalpath--he suggested i try GF to see if it helps, and i couldn't believe the difference it made. A few weeks later we did food allergy testing (igE & igG4) even on GF diet I tested in the Avoid category for Gliadin & Gluten and several other Gluten grains, plus several other food allergies. Knowing now I have celiac explains a lot of things when i was younger (never menstruated, under weight, IBS) these are things i had when i was a teenager.
I went gluten-free last year and felt SO much better. I had been diagnosed with so many different things I wanted to see if it would help. Three months later I went back on gluten for testing. I do have celiac. Now, two months after going gluten free again, I am beginning to feel better.
I wish I would have just listened to my body and not done the testing. I do not find being gluten free difficult. It is much easier than living with the pain of eating gluten.
I was told over 20 years ago that I was "allergic" to wheat (along with rice, corn, soy, tomatoes and green beans) and would probably be OK if I ate each of them (except for green beans) once a week. I basically ignored the advice, and am thinking it may well be why I have so much trouble losing weight.
The regular part of my annual physical (first one in over four years) is finished, so I'm going back on Monday to talk to my doctor about allergy and/or celiac testing. I've never stayed GF long enough to know if it'd help or not, but my daughter and I have been doing a lot of gluten free foods (grandson is a bit ADHD); it may not be helping me since most are made from rice.
So, maybe I'll have more "story" next week.
Linda C Oklahoma (CST)
"Food is essential to life; Therefore, make it good." --S. Truett Cathy (Chick-Fil-A)
I have never been tested, but I am almost 100% sure I am gluten intolerant. I started eating GF about two years ago at the suggestion of my naturopath. I have been "glutenized" by accident a couple of times and spend about 4 days feeling bad-muscle aches, general tiredness, and joint pain. I will probably never be tested since it is working for me so well.
I suffered from IBS and rashes on my knees and elbows for 30 years. It wasn't until I became severely anemic and low in vitamin D that the doctor ordered a colonoscopy because she thought I was bleeding internally. The GI doc asked if he could do an endoscopy if he didn't find anything in the colon. Sure, why not? Afterwards, he came in and said, "It's a good thing we did the endoscopy. All your hairs (cilia) are destroyed." I went GF after that and participated in an AT-1001 drug study for 2 months. My CD blood test was 24 at the beginning (over 10 is positive) and below 10 after going GF. Haven't had any bloating or IBS since. I love the GF diet because it forces me to eat healthier. I can eat fruits and veggies that I couldn't digest properly before.
Since CD is an autoimmune disease, it can lead to other autoimmune diseases like rheumatoid arthritis, etc. it wouldn't surprise me if you have it, considering your other diagnoses. You do need to be eating gluten prior to the test.
Just wondering if you all have been officially diagnosed with Celiac or gluten intolerance? Although new to hearing about both, I've been through years of suffering through what I thought was IBS (which grew to be almost debilitating). Last year, I was hospitalized with A Fib, found to be due to hyperthyroidism, Graves Disease. In the past, I've been told I have osteoprosis, suffered with another autoimmune disease called sarcoidosis in the 1980's.
I've been a binge eater and stuffed carbs for years, off and on. When I ate low carb I did feel better. After discovering CD info, a light went on and I'm almost sure I am gluten intolerant, at least. I have been eating GF for about 3 weeks. I just read that a blood test can tell me most likely if I have CD, but I have to be eating gluten.
I'm away from home and my regular doctor until April, so my plan is to talk to him and ask for tests then. I understand that I will be asked to eat bread for a while. I am going to have a colonoscopy then as well and thought about asking to have the biopsy to test for CD.
Wondering what others have done and if you would have any suggestions. I already feel much better after being GF for a few weeks. I am not using immonium as a way to get out of the house nearly as much.
Thanks for reading and looking forward to hearing your stories. Please email me, if you like.
aka Ladyhyjinx West Virginia
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