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Villi Damage
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I have been gluten free for about 17 months.I am not diagnosed. I am still having problems and have an appointment with a gastroenterologists the 18th of April, I am pretty sure the first thing they will want to do is scope me .

I know celiacs is diagnosed with the endo and biopsys and I realize that after being gluten free for about 17 months that they will not be able to diagnose me.

I believe that there is still quite a bit of damage in my small intestines, I have multiple food intolerances(( possibly leaky gut??))

My questions are;

I know I would not be able to do a gluten challenge , But does dairy cause the same kind of villi damage as gluten??

If I am celiac or even gluten intolerant and I add dairy back into my diet COULD the damage caused by dairy be enough to diagnose me?

I am pretty sure they will also want to do a colonscopy ( blood in my stool)

Is there any way to tell if the damage ( if there is any) to my large intestines,colon ect,, is caused by celiacs ?

Can either scope provide information / diagnose of leaky gut ??

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From a MedScape Article that I can't quote from.. here is a copy and paste:

"Although villious atrophy is not exclusive of celiac disease, it is considered a crucial finding. Other causes of blunted villi include tropical sprue, malnutrition, intolerance to cow's milk, soy protein intolerance, and infectious gastroenteritis. However, most of these conditions can be readily excluded on the basis of clinical history and laboratory data."

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Hey C!

Where did you end up finding the GI doc? Hopefully you found a decent one. My mom is seeing an endocrinologist in Erie who refuses to treat her thyroid. Her TSH is mildy elevated even on the old lab values. She claims she isn't having any symptoms, so who knows. When I moved back to the area and was working I was not impressed with the doctors there. At the very least it's a good idea to have the colonoscopy done. It won't show celiac but can look for other things. Two months after I had my EGD I had a colonoscopy. They found and removed a polyp and luckily it turned out to be benign. As for the upper scope it probably wouldn't hurt either since they can look for ulcers, barrets esophagus, do biopsy sample in the stomach for h pylori and look for parasites. I would still have them take the 6 samples (minimum) from the small intstine while there. Who knows how much damage you may have had before going gluten free and how your body has reacted since then. I think it would give helpful information even though you are already gluten free.

Email me sometime. I would love to chat!

R

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Hey C!

Where did you end up finding the GI doc? Hopefully you found a decent one. My mom is seeing an endocrinologist in Erie who refuses to treat her thyroid. Her TSH is mildy elevated even on the old lab values. She claims she isn't having any symptoms, so who knows. When I moved back to the area and was working I was not impressed with the doctors there. At the very least it's a good idea to have the colonoscopy done. It won't show celiac but can look for other things. Two months after I had my EGD I had a colonoscopy. They found and removed a polyp and luckily it turned out to be benign. As for the upper scope it probably wouldn't hurt either since they can look for ulcers, barrets esophagus, do biopsy sample in the stomach for h pylori and look for parasites. I would still have them take the 6 samples (minimum) from the small intstine while there. Who knows how much damage you may have had before going gluten free and how your body has reacted since then. I think it would give helpful information even though you are already gluten free.

Email me sometime. I would love to chat!

R

Thanks R.

the gastroenterologists works out of St Vincents . I am sooooo done with the Doc's here.

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I'm going through the same thing. self diagnosed last month. 17 months gluten free?, damn must feel good. I see my doctor tomorrow who is a bit baffled by my so many symptoms and no diagnosis. I'm only going on my third week gluten free (with a bad accidental reation in between (mustard)). I'm worried cause I hear that you need to be taking gluten to test for it, but I dont think I could go through it again. Ive been givin antibiotics repeatedly which only toned things down abit. Only got real bad the past few months but feel its been going on for a few years. From searching this forum and the internet I realized I must have a gluten intolerance, but even after cutting that out for a week if I ate something like manwich (wich is supposed to be gluten free) It actually felt like it was leaking into my abdomen, huge bloating, pains, (leaky gut)? For the past week I went insane in a good way. Pretty sure I went through SIBO, Celiac, and Leaky Gut. I did my research on all, what I came up with is: SIBO and Leaky Gut - Bought Prebiotics (good bacteria to fight the bad for the small intestine), Digestive enzyme when I eat, and try to take a multi vitamin evary day. I feel a lot better but know that theres a long road to recover after these things.

Today: my stomach decreased 3 inches - I thought I was getting chubby from moms cooking and eating garbage foods. I did not loose a pound so it was all inflamation, of what? my liver, spleen, stomach, intestines, appendix, all? Dont Know. Soon to find out I guess. Oh one more thing, since you been gluten free have you had a gluten accindent since? And If you think you have a leaky gut the best thing to do is...digestive enzymes, eat easily digestive foods, prebiotics, and dont stress, Im no doctor or specialist, but going through the same thing and sick and tired of being sick and tired and feel half way human so far. hope this helps :)

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Thanks R.

the gastroenterologists works out of St Vincents . I am sooooo done with the Doc's here.

I hear you sister! It was like taking a step back in time. When I was working, I couldn't belive the things I wasn't allowed to do/perform for my job. These were very basic things that I had been doing for 7+ years and was expected to do because it "was" part of my job everwhere else. Ugg! That's one of many reasons why I moved away. Anyway, now with the raynauds I don't think I could handle the winters. I freeze to death here. :lol: So glad you are going out of town. Local doctors missed my brother's sister in laws stomach cancer for two years. By the time she went to Erie it was really advanced. She even took her scope reports and pictures with her and they took one look at them, without examining her first, and said you have cancer. You may have known her. She lived in the same town as you and sadly she just passed away not that long ago.

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From a MedScape Article that I can't quote from.. here is a copy and paste:

"Although villious atrophy is not exclusive of celiac disease, it is considered a crucial finding. Other causes of blunted villi include tropical sprue, malnutrition, intolerance to cow's milk, soy protein intolerance, and infectious gastroenteritis. However, most of these conditions can be readily excluded on the basis of clinical history and laboratory data."

I have know for awhile that soy is as much of a problem for me as gluten, but I guess I never thought about soy causing villi damage.

I think I need to recheck and make sure I am not getting CC from soy somewhere in my diet .. I will admit that I am not as careful about soy CC as I am gluten .

I wonder if I am not healing because of soy CC?? :unsure:

Thanks Lisa

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I hear you sister! It was like taking a step back in time. When I was working, I couldn't belive the things I wasn't allowed to do/perform for my job. These were very basic things that I had been doing for 7+ years and was expected to do because it "was" part of my job everwhere else. Ugg! That's one of many reasons why I moved away. Anyway, now with the raynauds I don't think I could handle the winters. I freeze to death here. :lol: So glad you are going out of town. Local doctors missed my brother's sister in laws stomach cancer for two years. By the time she went to Erie it was really advanced. She even took her scope reports and pictures with her and they took one look at them, without examining her first, and said you have cancer. You may have known her. She lived in the same town as you and sadly she just passed away not that long ago.

Yes , I remember when she passed,, I am sorry, but not surprised with the doctors around here.

I am optimistic that this doc will be helpful, I hope so anyway because honestly I am about done with doctors.

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"Although villious atrophy is not exclusive of celiac disease, it is considered a crucial finding. Other causes of blunted villi include tropical sprue, malnutrition, intolerance to cow's milk, soy protein intolerance,

If my villi are damaged and it is caused by soy , what would they diagnose me as???

Soy intolerant ??

I am grasping at straws,a last ditch effort to find some/ANY answers because after this visit I AM DONE!!

I will not continue to sit and have doctors look at me like I am a crazy hypochondriac ,, 42 years of it is QUITE enough!!!.

I would like to have a diagnose/answers for my children and grandchildren so I will go to the gastroenterologists and do the scopes and their test but then I AM DONE!! ..

I , personally truly dont care what the diagnose is or isnt ,, I just want to be able to heal my body !!!!!

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