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Dan2010

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Dan2010 Newbie

So I don't officially know if I have celiac. With that said, I have stomach villi damage as the visual of my small intestine showed them laying down consistant with celiac. I also had elevated antibodies which promted the scope and biopsy. The biopsy was negative, but I also was eating much less gluten. Actually, I was eating much more gluten and protein than normal before falling apart.

So its been about 3 months since I had my crash. For 1 month it was waiting on testing. The second month I decided to just go gluten free and I did start making some slow progress. But then I still had the tightness feeling in my intestine so I thought maybe it was something else and started having gluten again. 2 weeks later I was feeling a bit worse and decided to do gluten free again. Its now about a week or so that I'm gluten free or so I hope. I found out that I was not completely gluten free from things like malt and maybe maltodextrin.

I would like to know what other things to try. What about bile salts? Fat seems to beva real pain to digest. I also can't go crazy on simple carbs either. I had read somewhere that maybe glutamine or some other amino acid helps the small intestine.

So far the major change from being gluten free is that I have about on bowel movement a day instead of 2-4 which I have been like that for years and thought maybe that was good. Now I think that was my body pushing out poorly digested food. I now have darker brown and they don't float. It used to be light brown and floating at least at first.

I had salmon a few days ago and that keeped me up at night. Lean steak seems to sit well. But I need fat cause I am skinny and might be dealing with some lack of fat solible nutrients.

Any thoughts are appreciated even if its an agreement with another post as validation


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Simona19 Collaborator

Hi!

I don't know much about the medical things, but I can just tell you what happened to me.

I also had major trouble with digestion of fat and sugar(carbs, even grapes gave me gas and pain). I saw the doctor at the Celiac Center in Columbia University Hospital in New York. She had me tested for the small intestine's bacteria overgrowth.

The SIBO can also be associated with the damaged intestines from celiac. The doctor ordered a very simple breathing test.

Now I'm on the two antibiotics for 14 days. I do feel like I was born again. No gas at all, can eat fruit again, and also some fat with no problem. :)

Maybe you have the same thing. I don't know if that is what you have, but is worth to try to check it.

Simona19 Collaborator

I found the symptoms of the Small Intestine Bacteria Overgrowth.

SIBO can mimic the celiac disease. You can have celiac and SIBO too. I look on the internet for symptoms of SIBO, and they are: gas after fruits or sugar- carbs, diarrhea or constipation, abdominal pain. Some patient have chronic constipation rather than diarrhea. With SIBO you will loose vitamins and minerals like with celiac disease. You can have SIBO for many years which can cause:

1. malabsorption of sugars and carbohydrates (gas), Lactose intolerance, malabsorption of other sugars (sucrose, sorbitol- pears, fructose), diseases of the pancreas and inadequate amounts of pancreatic enzymes which can prevent you to digest fat, and you can have vitamin deficiencies like magnesium because they need fat to be absorbed in to our bodies, diseases of the lining of the small intestine like celiac disease.

2. Rapid intestinal transit which can make you Iron deficient

3. Weight lost

4. fatigue and muscle pain.

5. Poor appetite

Good luck!

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    • trents
      Yes, it does. And joint pain is another celiac symptom that is now well-recognized. 
    • ThomasA55
      Does my iron loss sound like celiac to you?
    • trents
      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it is important for you to get tested is that many or most people who don't have a formal diagnosis find it difficult to be consistent with the gluten-free diet. They find ways to rationalize that their symptoms are due to something other than celiac disease . . . especially when it becomes socially limiting.  The other factor here is by being inconsistent with the gluten free diet, assuming you do have celiac disease, you are likely causing slow, incremental damage to your gut, even though you are largely asymptomatic. It can take years for that damage to get to the point where it results in spinoff health problems. Concerning genetic testing, it can't be used for diagnosis, at least not definitively. Somewhere between 30 and 40% of the general population will have one or both of the two genes known to be associated with the development of active celiac disease. Yet, only about 1% of the general population will develop active celiac disease. But the genetic testing can be used as a rule out for celiac disease if you don't have either gene. But even so, that doesn't eliminate the possibility of having NCGS (Non Celiac Gluten Sensitivity).
    • ThomasA55
    • trents
      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
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