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I found this site a couple of weeks ago and it's great. It was suggested last month that I most likely have celiac disease. I tested highly positive on my blood work and was referred to a GI doc. I am going in tomorrow for an endoscopy. Since I am anemic and there is a history of colon cancer in my family (my grandfather) they want to do a colonoscopy too. I was really suprised when the doctor told me that celiac disease was most likely the problem. I had only heard of it when I was researching information on food intolerance. No one in my family has ever been diagnosed with this.

Looking back there were probably symptoms that I have had for quite a while that I have just brushed off. I have always been thin and I have had a lifelong tendency to be slightly anemic (now I'm really anemic). Back when I was a teenager and through my 20's (I'm 43 now) I occassionally would have episodes of intestinal pain that were unexplained. I couldn't seem to attribute these attacks to any specific thing I had consumed. The only time I ever did see a doc about it (back when I was in high school) he told me I probably just had gas and told me to take a teaspoon of Mylanta every day. What a jerk.

About 3 years ago I problems with diarreah for about 2 months. I went to a doctor who apparently was not tuned into the idea of celiac. Her only suggestion was that if I continued to have problems that I should see a GI. Well, I just started to mysteriously feel better a few weeks afterward, so I was just convinced that it was the stress that I was under at that time.

I don't always have obvious symptoms like diarreah but that is what finally drove me to believe that I had a problem and that it wasn't just "all in my head". I had been having chronic problems since February that seemed to let up once in a while. I finally couldn't take it anymore and was able to see a different doctor. She seemed to be tipped off right away from taking my history and ordered the antibody panel. When she called me with the results I got off the phone and cried. It was such a relief to have someone tell me "YES there is something real going on with you!! You aren't nuts!!"

Now that I have learned more while I have been waiting to get in for this biopsy I am convinced that the results will be positive. I also suspect that my 14 year old daughter is too and will discuss it with her when I take my daughter in for a physical next week. I'm wondering if my other two kids should be screened too even though don't have symptoms.

Peg

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Welcome Peg. Definitely have your kids tested. If they are gluten intolerant, you are sparing them years of damage by getting them tested now and on the gluten-free diet rather than waiting until they have so many symptoms that they are in agony. That is if they have it. Guess you won't know until they are tested though. Best wishes to you and your family. All the celiacs here are awesome and so helpful.

Rian

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ALL first-degree relatives should be tested -- parents, kids, and siblings. All mine were and my 70-year-old father came back highly positive despite only minor symptoms.

From what you've described, you have celiac, no matter what the biopsy says. With highly positive tests and symptoms, it's nearly a 100 percent sure thing even without a biopsy.

Sometimes biopsies come back negative either because they didn't take enough samples or because you quit eating gluten (did you?). The ultimate proof after the biopsy is to go gluten-free and see if you improve.

richard

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    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
    • I do not struggle with this and I was brought up the same way as you. I don't struggle because for many years off & on we didn't have a bathtub, only showers as well as this being therapy or medicinal for the skin - heck even for the muscles as I age. I figure I've earned my right to luxuriate or medicate with baths any time I've a mind to. My husband saw just how bad my dh got & NEVER begrudges me a nice long soak in the big soaking tub we now have.
    • Hi, No, I do not have celiac  disease. I have an ankylosing spondylitis which is an auto-immune disease provoking an inflammation of the joints. Under the advice and supervision of my doctor and the professor at the hospital I follow a gluten free & casein free diet, which is extremely successful in preventing inflammatory events. And I've been doing so, strictly, for more than 6 years. So I'm not Celiac, but I can tell you that I react strongly every time I take gluten even in small amounts. Even soya sauce, which according to this website has an almost zero dose of gluten, is a lot too much for me. Nevertheless I allow myself to eat food which has been processed in a factory which processes gluten. To conclude, I would say that when you are travelling, especially in a country where celiac disease is scarcely known, you should be twice as careful as when you're going out at home. In the end you can never guarantee that the cook has cleaned his pan after using soya sauce and so on... You can only bet
    • Along those lines, many Americans are now pursuing gluten-free eating. Gluten ... Diagnosis of celiac disease typically requires a history and physical ... View the full article
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