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Ladyrhedd

Is It Really Celiac?

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Hello, All.

I am a 34 year old mother to 4 children. I have had joint and muscular pains since about 7 or 8 years old. I have also had chronic constipation since around the same time. Never to the point where I couldn't go at all, but I'll go up to 5 days without a BM (I honestly think I've been so accustomed to it that the bloating doesn't bother me. I usually only realize I was bloated after I go and feel "deflated") sometimes and would be on the bowl for a half hour or more. Never have/had diarrhea unless I was very sick with a virus and once with food poisoning at the mall 7 months pregnant (fun, fun! LOL) Since having children (so over the last 9 years), I have been tested for thyroid issues 3 or 4 times, always comes back normal, even the extra tests they do.

I went to a gastroenterologist complaining of abdominal pains both low in my abdomen and up high on the right side. I was told several years ago I have sludge in my gallbladder. A recent sonogram showed polyps in my gallbladder, no sludge. My gallbladder is very symptomatic and I will be having it removed in July. I had rectal bleeding determined now to be from hemorrhoids, but the gastroenterologist suggested a colonoscopy at the time. I also complained of getting very nauseous, especially at night. He offered to do an endoscopy at the same time as the colonoscopy to look for possible ulcers. The only thing he did find was damage to my small intestines that he said was consistent with celiac disease. My blood work, which he had done before hand, did not show antibodies in my blood to suggest celiac. He did say he would have diagnosed me immediately had I had the antibodies. He then asked me if I would be willing to be genetically tested. I agreed to be tested and I was put into the high category for likeliness of developing Celiac. He recommended I try a gluten-free diet and wants me to see a celiac specialist. He said my results were not exclusive, but didn't strongly support I had it, either. I got these results about a week and a half after having the colo/endoscopy. I felt better after having the colo/endo done, like I'd been flushed out from the colon cleanse I had to use. I was even having an easy time going to the bathroom. I decided to go gluten free for two weeks and I seemed to be less gassy, but that is all that I noticed changed from how I already was having an easy time in the bathroom from the testing. I reintroduced gluten into my diet and ended up with increased gas. About a week and a half ago I removed gluten from my diet again. This time I don't notice much of a change. Now I wonder if it could really be celiac? Did I only feel better from the colon cleansing for my test or is there really something to gluten free and I just haven't given it a fair chance? Also, I am sure I've had plenty of things cross contaminated with gluten because no one else is going gluten free with me. Type II diabetes does run in my family but nobody has type I in my family. The only person I know in my family who has thyroid problems is my father's aunt. She has Grave's disease. Other than that, there're no people who have autoimmune diseases that I know of in any part of my family. One of my children has a severe life threatening peanut allergy. Lastly, I developed a serious life threatening allergy to zucchini, pumpkin and shellfish over the last year and a half.

Please share your thoughts with me.

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He offered to do an endoscopy at the same time as the colonoscopy to look for possible ulcers. The only thing he did find was damage to my small intestines that he said was consistent with celiac disease. My blood work, which he had done before hand, did not show antibodies in my blood to suggest celiac. He did say he would have diagnosed me immediately had I had the antibodies. He then asked me if I would be willing to be genetically tested. I agreed to be tested and I was put into the high category for likeliness of developing Celiac. He recommended I try a gluten-free diet and wants me to see a celiac specialist.

One of the symptoms of eating gluten when you are a celiac, is fuzzy thinking that makes you think you might not be. This is an auto immune reaction which causes long term malnutrition damage, which will not magically disappear in a week and a half of a flawed gluten free diet.

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You didn't give it a chance. It can take MONTHS for bowel issues to resolve, and in the beginning, there can be a lot of back and forth...fine one day, sick the next. No rhyme or reason to it.

From what you wrote it seems very obvious you have a problem with gluten.

A few steps you should take first.

#1 call your dr and get a copy of your labs that were done. Their is an entire celiac panel that should have been run. Most doctors do only 1 or 2 of the older, less accurate tests. Post the labs and results on here. We will tell you if any are missing.

#2 if you have had all the labs, and the tests are still negative, request an endoscopy. Insist the GI take several samples, as celiac is often patchy and easily missed. Recommendation is 8-16, many doctors take only 1 or 2.

#3 immediately after the endoscopy, go gluten free. Give it a good 30 day trial with NO cheats, because even tiny amounts of gluten will affect your results. Regardless of the results of the endoscopy, stick with the trial. Celiac just doesn't always show up, and gluten intolerance can NOT be tested for, but will affect you just as badly.

Hope you get some answers- you came to the right place!

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Hi,

You didn't give the gluten-free diet enough time. It can take varying amounts of time to heal the gut. Two years is not far-fetched to get to feeling better. Some people feel much better right away but others may go back and forth from better to worse until things really settle down and improve.

Your doc sounds pretty good. There are a few other conditions that can cause villi blunting, but they are not as likely as celiac disease IMHO. If he can't eliminate those other conditions then what's he left with? Celiac disease.

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The blood tests have a 20-30% false negative rate. If you have damage to your small intestine, you must go completely gluten-free and allow yourself time to heal. You may have symptoms resolve that you didn't know were symptoms! :D

Read around the forum and ask any questions that you may have.

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