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Possibly Celiac?


hjello

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hjello Newbie

Hello,

I stumbled across some information on Celiac looking up some symptoms I was having and was shocked to see that some other problems I have had this passed year could be attributed to Celiac.

First about 10 years ago I was diagnosed with IBS and have always had very large BM's, frequent abdominal pain and occasionally diaharea. I have lived with it.

However, the last year some odd things happened which I thought we all unrelated. I was pregnant and my son was a very low birth weight, 4lbs, 12oz. I have had kidney stones 2 times and my knee cap dislocated. I have read that kidney problems and joint issues could be related to Celiac.

I also have dealt with back pain and stiffness for many years and jaw clicking.

When I read about Celiac the 2 main symptoms I don't have are BM's that float and weight loss. Infact, I am a litte overweight, carrying about 40 lbs extra. Are these 2 symptoms the most common in people with Celiac?

I am going to call my doctor and ask about testing, but I was hoping to hear your thoughts on my symptoms


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Ursa Major Collaborator

Hi, and welcome to these boards.

At least 40% of people with celiac disease are overweight, it can go either way. Malnutrition can cause people to either lose or gain.

There are over 200 possible symptoms of celiac disease. Obviously, not everybody has all of them. In fact, it seems that few people present with the same symptoms. The minority of people with celiac disease have the 'typical' presentation of diarrhea and weight loss.

IBS is a collection of symptoms (hence a 'syndrome') with have a cause. An official 'diagnosis' of IBS is meaningless, as the cause of the symptoms has not been found.

The majority of people here had a diagnosis of IBS before they were finally correctly diagnosed with celiac disease.

Your son could have gotten insufficient nutrition because your bowels are damaged, and you don't absorb enough nutrients for yourself, never mind for a growing baby as well. You are fortunate that your son is alive, it is very common to miscarry babies when having undiagnosed celiac disease (I had eight miscarriages) or to have a stillborn baby.

I would advise you to get tested for celiac disease immediately. Don't stop eating gluten before testing, as the tests won't be accurate otherwise.

gfpaperdoll Rookie

Just wanted to add a welcome to the group to ursa's great post.

I just love these people that find out their problem on the internet - very savvy of you...

Once you get tested & go Gluten free you will not believe how wonderful you are going to feel. I am 61 & instead of getting older, each year I feel younger!!! :) & very blessed...

hang with us through out your testing etc - you might get a doc that knows nothing (being polite here & not using the word I would like to)

I think there are 5 blood tests that need to be run & check to see if you can get it sent to a good lab... You will need to print out the list of the blood tests & take them to the doctor with you & STRESS that you want them ALL run...

we call the IBS diagnosis = I Be Stumped

:lol::lol::lol::lol:

& you have to go to med school for years to be qualified to diagnose it !!!!! But since the doc is wearing a white coat, everybody & their relatives believe it :(

jhow32000 Rookie

No, no, no......you have to read, and read, and read about this stuff to help yourself. Celiac disease manifests in non-specific ways. No two people have the same symptoms and alot of overweight people with supposedly normal BMs have celiac disease.

The damage that is done occurs in the small intestine, the small intestine absorbs various nutrients in its different levels. However, the damage that is done to the small intestine by autoantibodies is patchy and does not occur the same way in any of us....this is partly why people with celiac disease have differing issues. For instance, I have had severe bone and joint pain, wasting, terrible acne, and deep depression from my celiac disease while my mother had repeated miscarriages, endometriosis, stomach pain, bloating, and weight gain. None of us had particularly bad GI symptoms and we all had very different problems. You could very well have it but be warned that the only way to be sure is to go Gluten Free strictly for about 6-8 weeks. I have had false negatives as have others in my family who are now officially diagnosed.

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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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