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No Money In It For Thr Drs
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It is amazing to me that the dr's that I have spoken with have insisted on doing a biopsy. Why want they just test the stool sample? There is no money in it for them. I have spoken both with specialist at Duke and UNC. the protocal is biopsy to confirm the blood test. I shared with them the name of DR. Fine and his research through what I learned reading all the post here, one told me if that was the route I wanted to take "good luck" and he hung up! When did doctors give up on finding out what was best for the patient? It is a shame that we have to be in total control of our medical diagnosis.

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Unfortunately a lot of doctor do not accept Dr. Fine's method of testing and would rather do a biopsy before making a dx of celiac disease. I have been down both paths I let my GI do all the tests he wanted to do only for them to come back negative then I chose the Enterolab route, it was the best decision I ever made for me and my daughter.

People also need to remember it isn't always neccessary to go through these invasive procedures, you can always TRY the gluten-free diet for a couple of weeks / months and if you see an improvement in your health then you have celiac disease or gluten sensitivity and should NOT ingest gluten.

Just my opinion :D

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JHMom-

SO the GI test from your regular GI doc came back negative (as mine did) but the enterlab results were positive? Has the CF diet helped or do you still have some of the same symptoms?

I am considering buying a test from enterlab- my GI doc has been no help (now 2 years of coming and going to her office) still have all the same symptoms but getting worse!!

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My doctor was baffled about my canker sores that had been reocurring since Dec. We tried all sorts of stuff and he was at the end of his resources to help me. Someone on another forum I belong to suggested I try looking into celiac. I have 13 of the symptoms and one complication (severe osteoporosis). So I began a gluten free diet. Within three days the sores were gone. I only had reocurrances when I challenged with two Girl Scout cookies and once when I mistakenly drank my son's water after he had been eating soda crackers and there was backwash in it. (I know, EEEEEEW!) Anyway, I wrote letter to my doctor about my results with the diet and told him if he knew how to do the blood tests or knew the labs here could process them, I'd be happy to come in for blood work and although reluctantly, I would also do the biopsy if he really wanted me too. His nurse called yesterday. Apparently no one here does the blood work because he said the only option is the biopsy for a definite diagnosis. However, he said if I am having good results with the diet to just continue it. He didn't think the biopsy was necessary unless I just wanted it. He also congratulated me on figuring out the cure to my canker sores....said, "Good Work!"

I am happy with the decision to just continue the diet without a medical diagnosis. I've had good results. Would I abandon the diet if I had the biopsy and it came back negative? No, I don't think so.

Marsha :rolleyes:

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JHMom-SO the GI test from your regular GI doc came back negative (as mine did) but the enterlab results were positive? Has the CF diet helped or do you still have some of the same symptoms?

I am considering buying a test from enterlab- my GI doc has been no help (now 2 years of coming and going to her office) still have all the same symptoms but getting worse!!

Yes, my blood work and endoscopy biopsy were negative. The biopsy showed "patchy inflammation" but was not enough to warrant a celiac disease dx. I purchased the Enterolab "gluten sensitivity" test it came back positive and upon Dr. Fine's recommendation also purchased the "malabsorption test" and it too came back positive. I immediately started the gluten-free diet and could tell a difference within a couple of days, the abdominal pain was gone. I still have some GI probs but I think it's because of something else, not gluten sensitivity.

My doctor NOW says (after I sent the enterolab results to him and advised him that I was on a gluten-free diet) that "it takes time for a disease to show up in the blood or in a biopsy", well time is something I DID NOT have, I could not bare to live in that kind of pain "waiting on it to show up".

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I appreciate everyone here. It is such a comfort to know that I can share Celiac concerns. Having this message board has been a true blessing. The people around me just say" Whats the big deal, just dont eat bread. " If they only knew.lol

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"I appreciate everyone here. It is such a comfort to know that I can share Celiac concerns. Having this message board has been a true blessing. The people around me just say" Whats the big deal, just dont eat bread. " If they only knew.lol"

I will be going to my parent's for Mother's Day weekend. My sister and her husband and another lady friend of my mom's will be there too. I know I will get baraged with questions about why I am eating the way I do. My brother in law will be especially challenging. He is always so sarcastic and negative about everything. I know he will try to make me feel foolish for eating so strangely. I am praying it all goes smoothly.

:unsure: Marsha

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    • Hi, I am 20yrs old and have had this weird stomach pains on and off for 2 years. They started by just having pains on my left side when I sucked in or pressed on my tummy. In the last 3 months they have gotten really bad, with a lot of bloating and used to occur almost every time just before bed I would get bloated, and feel constipated like I just needed a hole in my stomach to release the pressure. I have had tests for lactose and gluten, and they both came back negative. I was not having any gluten at the time of the test which I have read can affect the results. I had little help from my doctor so I went gluten free which was working really well and I would only have pain once every two weeks. The last three nights were awful, I was in so much pain I struggled to walk, and again they would go away in the morning. I looked like I was pregnant and relief was only through passing wind (sorry for the detail!). I was wondering if anyone has had similar experience, or could point me in a direction to help me. The weird thing is that I did have gluten one day and that didn't seem to affect me at all. Then I will have something like vegemite (I'm from Australia) and this is the only thing that I can think off that would set me off (it contains wheat). So I don't really know what do to or where to go, these stomach pains have been heightened since I had a horrible gastro for a week, and went to hospital. Could it be possible that my gut lining has been damaged? I have become really stuck on what I should do next, as tonight my stomach is fine, I actually feel hungry (previously I have felt super full as a result of being bloated), so I have no idea what triggered that horrible episodes before I went to bed for the last few nights. Any thoughts or suggestions would be amazing, thank heaps
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    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
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