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MrsNewman

Confused On What To Do

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Hello,

I'm new here and hoping someone can give me some advice/guidance. I had the blood tests done after a few people suggested my health issues could be celiac or gluten related (not sure which ones, just told my doctor I wanted the bloodwork to test for celiac). My doctor's office told me one blood test was negative and one was inconclusive, but did not give me any numbers or ranges. Because of this, I thought maybe I was on the wrong path thinking celiac. However, after more research and talking to people who have celiac, I have a strong suspicion that it could be causing all my problems. I am an otherwise healthy 23 year old woman and I could never figure out why I felt so awful. My symptoms include:

All gastro isses, alternating between constipation and diarrhea

Abdomnical cramps & stabbing/burning pain, gas, bloating, burping, horrible stomach noises & gurgling

Bruising easily

Constant fatigue

I get canker sores in my mouth often (many at a time)

I have always been very small (thin) and have trouble gaining weight, no matter what I eat or how often I eat

Constant nausea

Aches & pains

Insomnia

Depression & anxiety

Menstrual problems

And just an overall "blah" feeling

My insurance will not pay for the endoscopic biopsy so it would be all out of pocket for me ($1,500). I really don't want to incur that cost right now and I really am not thrilled about the procedure, although if I absolutely need to do it for my health, I would. Does anyone have any advice on what I should do? I've been told I could try the blood tests again, try gluten-free and see how I feel or do the endoscopy. I'm just not sure where to go with this but I'd like to feel better. I've been having these problems since I was about 15 so it would be great to have a "normal" life with energy, excitement, etc. Any help that anyone could offer would be much appreciated!!

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How far apart were the tests and were you on gluten each time? It sounds like coeliac symptoms. Have you been tested for thyroid and anemia?

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How far apart were the tests and were you on gluten each time? It sounds like coeliac symptoms. Have you been tested for thyroid and anemia?

I believe I've been tested for thyroid and anemia when I was young...not sure how many years ago and if those results would even be accurate.

As far as my recent blood tests, they took the blood at one time and ran multiple tests (so I'm told). I was eating gluten at that time although I'm not sure how much. I'm just not sure how important a diagnosis is and if I need to keep pursuing medical tests.

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I believe I've been tested for thyroid and anemia when I was young...not sure how many years ago and if those results would even be accurate.

As far as my recent blood tests, they took the blood at one time and ran multiple tests (so I'm told). I was eating gluten at that time although I'm not sure how much. I'm just not sure how important a diagnosis is and if I need to keep pursuing medical tests.

Testing for thyroid & anemia years ago need to be repeated. Just because your thyroid was functioning years ago, it may not be now. You might not have been anemic then but you could be now.

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Personally, I have very little faith in endoscopies. Even Dr. Alessio Fasano has spoken negatively of them during the past few years at conferences, largely because the damaged sections can be missed, the endoscope can't reach the entire length of the small intestine, and the results can be wrong because either the surgeon or the pathologist is not experienced enough with the procedure (or is not fully competent). Therefore, you could spend $1,500 and the results might be inaccurate.

I would suggest that have the blood tests done again (there are four tests available, so you might ask that all four be run) and that you then go on a strict gluten-free diet regardless of the results. Because dairy, soy, and oats oftentimes cause problems for people who are sensitive to gluten, you might try initially eliminating them, too. Then you can add them in one by one to see if you can tolerate them. In the end, let your body be your guide. You'll know soon enough if gluten has been an issue for you since you were 15.

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I second the above, as well as agreeing that it would be a good idea to be tested for thyroid issues and anemia (as well as having them rub a full blood panel while they're at it to check for other vitamin deficiencies common--but not guaranteed--in celiacs).

If your celiac tests are negative and other possible causes come back normal, since you're willing (good thing) I'd say give the gluten free diet a very strict try along with the elimination of dairy, oats (many celiacs can't even have certified gluten-free ones, I can't) and possibly soy (not as good for you as they say, anyway). That also means being aware of the potential for cross-contamination (lots of info on here about that) and avoiding eating out if you can for the time being. If you see no improvement in maybe 8 weeks, then you could think about another possible cause. But honestly, your symptoms are classic celiac and the blood tests are not very reliable. Plenty of us test negative, myself included. If you figure out that it's gluten hurting you, stay on the diet for good. Humans have, in the past several hundred years, forgotten how to listen to our bodies. We shouldn't need a piece of paper to tell us not to eat gluten if we know it makes us sick.

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Thank you for the responses. I have always heard the endoscopy is the "gold standard" for celiac diagnosis so I didn't realize there could be flaws with the endoscopy just like with the blood work. If that is the case, I would prefer to try a gluten-free lifestyle and see if it makes me feel better. I've been keeping a food journal prior to going gluten-free so I could compare results once I go completely gluten-free (starting today).

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Thank you for the responses. I have always heard the endoscopy is the "gold standard" for celiac diagnosis so I didn't realize there could be flaws with the endoscopy just like with the blood work. If that is the case, I would prefer to try a gluten-free lifestyle and see if it makes me feel better. I've been keeping a food journal prior to going gluten-free so I could compare results once I go completely gluten-free (starting today).

I apologize to those who have read this information fifty times already but a celiac expert (she is a gastroenterologist) in Canada says that only 39% of biopsies done here are done CORRECTLY so that means that 61% are inaccurate. She said one reason is because most surgeons take only a few biopsies when there should be at least 8-11 taken. She also said that everyone with celiac must avoid even certified gluten-free oats for two years after diagnosis - not necessarily for gluten but to give our gut time to heal.

Having said all that I did have the biopsies done because I had no obvious reaction to gluten whatsoever and I needed to prove that I indeed have it (I loved gluten so much and did not want to give it up unless absolutely necessary!). Now that my biopsies came back positive I am very glad I had the biopsies done because I believe they likely could have saved my life (or at least made my future healthier). Who knows what associated issues would have happened down the road?

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