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Does This Sound Familiar?


shiloh33

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shiloh33 Newbie

I'd really like some thoughts from others regarding this. I have recently heard of celiac disease, and when I heard the symptoms, some seemed to fit. Abdominal pain, bloating, flatulence (!), general discomfort. This is pretty consistent but is not present all the time (is that normal?). When I heard of this, I recalled that my grandmother has sprue. I had know this all my life and had been told many times that dietary restrictions would be in my future. I googled sprue and discovered that sprue and celiac were the same thing. My symptoms are not severe, but they are uncomfortable and embarressing! I know something is wrong, maybe ibs?, but not sure what. I hate to go to the doctor for something that can only be managed with diet. I thought of going gluten free, but I have no will power (have tried to lose weight for years, but that has never happened - also, is weight loss a neccesary symptom?). It will be hard for me if I am not certain that this really is the problem. So . . . I'd like to know if this sounds familiar to any of you - particularly the lack of some symptoms (weight loss, diarreah, constipation)? Also, can a gp order the blood test, or do you have to go to a GI doctor? One more thing - I have abdominal pain every few days, but occassionally I had 3 days of intense pain (I thought my appendix had burst!) about a month ago and a day of pain a month before that. Does this sound familiar? Please respond if you can answer any of these questions, it would be great to hear from people who have experience! Thanks!


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rsm Newbie

My family has a history of digestive problems but no one ever investigated. I thought it was IBS and my daughters thought it was IBS. The oldest researched celiac and went gluten free and her symptoms were much better. Seeing her success I went gluten free 9 weeks and I am recovering slowly. Your story is familiar, sounds like home!

Felidae Enthusiast

Yes, your gp can run the blood tests. Since your grandmother had sprue, I think you should get tested. Undiagnosed celiac may cause other effects such as anemia and osteoperosis.

mftnchn Explorer

Hi, some people don't have weight loss at all, and some even have weight gain from bloating and edema. Bloating is very common.

Since celiac is not the only explanation for your symptoms, I think it really makes sense to check it out.

little d Enthusiast

shilo33

Hi, Welcome to the board, I am one of those people who have had a hard time loosing weight, In the past (the last few years) I have tried to diet eat hardly anything, maybe ceral in the morning, a sandwiche in the afternoon and a small meal for dinner nothing big. I am not a big snacker, or a big sweet eater, but did have a few snacks that I liked to eat not many. I had seemed to gain alot of weight couldn't figure out why, nothing ever made any sense to me. A few times when I ate a meal, home or out I would get sick in the middle of the night or the next day, but no one else was sick and no virus going around to get me sick, I never understood why. Then almost 2 years ago My sister told me that she was have simular symptoms as mine and she looked up her symptoms on the web and found Celiacs, and then I contiued to look as well, I even looked at IBS but I have a lot more syms for IBS I think so everything that I have experienced in my life like small stature, toothe enamel defects, can't loose weight, concentration and others. I did loose weight going Gluten free 14lbs when I first started the diet then all my test came back negative. So I started eating regular food again gained all back plus some. Everybody here who have negative results as well I have been told at least 60% have yet been diagnosed. And proply won't get a diagnoses. Everyone reacts differantly to gluten foods some get sick immediatly like Pedro hear, others like me not too bad, my reactions to gluten are delayed for a day or so. So I never know when and where the D is going to show its ugly head. So try the diet for 2 weeks see if it helps you if it does then keep doing it, You can go to your Family doc and ask for a Celiac Panel and let the more knowlegable ones here what the results are and they can tell you there opinions on your results. But don't wait too long.

Later, Donna

NoGluGirl Contributor

Dear Shiloh33,

The symptoms you exibit sound all too familiar. I had blood tests and biopsies come back negative. However, that does not rule Celiac out. My physician told me that those tests are not always accurate (particularly the blood tests). I have a typical history, too.

I am of short stature and always have been, I had digestive issues from infancy, I have been anemic, had my gallbladder removed, and have Thyroid disease. My family has a high instance of digestive problems on both sides. I am of Irish descent, making my chances of having Celiac high. My reaction to gluten is so severe, I do not need to worry about will power. I get violently ill from ingesting even a microscopic amount of gluten. I break out in a sweat, get really nauseated, start shaking all over, get the sudden need for a bowel movement, my hands sometimes go numb, and if I do not get a promethazine down quick enough, I get dry heaves that make me feel like my insides are emploding! It is something I avoid at any and all cost! Cheating is not tempting at all. I have never ingested gluten willingly since beginning this diet in August of last year.

I want to avoid extra problems the untreated Celiac leads to. I do not want intestinal cancer, osteoporosis, diabetes, or any other problems! Damage is irreversible if diagnosis is not made soon enough in some cases. The longer you take to be diagnosed, the more damaged your intestines will be. Since this is a genetic disease, chances are, because your grandmother had it, you, your siblings, and your mother or father are at high risk.

Sincerely,

NoGluGirl

P.S. You would be surprised at some of the things we can have, I know I was!

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      Thank you that’s really helpful, hopeful won’t have to have a biopsy.
    • RMJ
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      Hi everyone. Back in 2022 I had blood work drawn for iga ext gliadin. Since then I’ve developed worse stomach issues and all other health issues. My doctor just said cut out gluten. He did no further testing. Please see my test results attached. I just need some direction cause I feel so ill and the stomach pain is becoming worse. Can this test show indications for other gastrointestinal diseases?
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      Thank you. These were the results TTG ABS NUMERICAL: > 250.0 U/mL [< 14.99]  Really don’t understand the results!
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      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
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