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Celiac....or Ulcers....

kaki-clam

By kaki-clam
in Coping with Celiac Disease

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kaki-clam Enthusiast
kaki-clam
Posted

After two years of following a gluten free diet ( to my knowledge, i have not consumed gluten in two years) I am still feeling the same. I sought out a new doctor, he seems to think i don't have Celiac, but that I have ulcers in my small instestine that are being aggrivated by gluten, due to SEVER constipation. He gave me some stuff called SBC to help regulate the bacteria in my intestinal tract and it is working!! the constipation is all but gone. (not to be too graphic, but my constipation was soo bad, i was lucky if i went once every two weeks)

Anywho....he asked me how i was diagnoised with Celiac and I told him my blood test was negitive, but i did have the biopsy and that was positive. I know there are soo many different opinions out there about how to know for sure....

he suggested i eat gluten and be retested. I am a little leary of this, as in the past if i even thought the word gluten, my stomach would cramp up and i would feel ill for two days. I have tried a little here and there over the past month, i had a slice of pizza, and a brownie on two seperate occassions, i didnt' feel sick after either one, but i wondered if it was enough.

Last night, i bit the bullet, i got the 20 piece nugget from McDonald's and shared with my boyfriend...(10 each), i woke up this am feeling the best i have felt in a long time.

I want to try to eat gluten and get retested, but i don't want to over eat gluten and be sick, i don't want to get my hopes up that it's not Celiac.......i am afraid...

so...can you please post thoughts, comments, etc on this new theory of intestinal ulcers and blood test vs. biopsy... any other thoughts or comments on this post...i am looking for some serious help here :)

thanks!!

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Skylark Collaborator
Skylark
Posted

Did your biopsy go back to normal off gluten? If so, you're celiac. If you never had a followup biopsy to confirm healing off gluten you won't much from re-glutening yourself.

Takala Enthusiast
Takala
Posted

One can always find a specialist more interested in making money than diagnoses.

By "SBC" do you mean Sea Buckthorn Berry ?

see cautions: should not be used by people with inflammation of the intestines or obstructions

Open Original Shared Link

I don't suppose he came up with a better reason for the ulcers, nor any proof they are really there unless you have been scoped again.

kaki-clam Enthusiast
kaki-clam
Posted
  • Author

One can always find a specialist more interested in making money than diagnoses.

By "SBC" do you mean Sea Buckthorn Berry ?

see cautions: should not be used by people with inflammation of the intestines or obstructions

Open Original Shared Link

I don't suppose he came up with a better reason for the ulcers, nor any proof they are really there unless you have been scoped again.

SBC is saccharomyces boulardii and he's not making money off me, he treats me at no cost. I sought him out for help and so far, he has been the only doctor in 11 years to tell me that pooping twice a month is NOT normal. It isn't feasable to scope the entire small intestinal tract

i am glad to be feeling better for the first time in a long time, and i guess that i just need to follow his advice and eat enough gluten to be retested.....if it's Celiac, then i'll know.

pricklypear1971 Community Regular
pricklypear1971
Posted

SBC is saccharomyces boulardii and he's not making money off me, he treats me at no cost. I sought him out for help and so far, he has been the only doctor in 11 years to tell me that pooping twice a month is NOT normal. It isn't feasable to scope the entire small intestinal tract

i am glad to be feeling better for the first time in a long time, and i guess that i just need to follow his advice and eat enough gluten to be retested.....if it's Celiac, then i'll know.

It's a super-duper probiotic. It's not unusual for people with digestive issues to benefit from probiotics and digestive enzymes. I'd definitely give it a long trial ( 3-4 months) then get another endoscopy.

I'm glad it's working for you. C is literally a pain in the butt!

The question is why do you have the "ulcers"?

kaki-clam Enthusiast
kaki-clam
Posted
  • Author

It's a super-duper probiotic. It's not unusual for people with digestive issues to benefit from probiotics and digestive enzymes. I'd definitely give it a long trial ( 3-4 months) then get another endoscopy.

I'm glad it's working for you. C is literally a pain in the butt!

The question is why do you have the "ulcers"?

His theory is that because my small intestine holds the waste for such long periods of time, that is is causing the ulcers. Like, if you lay in bed for two weeks and never get up or move in anyway, you would have a bed sore, that kind of thing. He feels that by relieving the constipation, the ulcers will heal, he didn't say i wasn't Celiac, he just thought that since my blood test was negitive, it didn't make sense.

pricklypear1971 Community Regular
pricklypear1971
Posted

Perhaps it would be a good idea to get a copy of the biopsy lab report and any associated comments, notes? Never know what they say....

Many people need probiotics/enzymes in addition to a gluten-free diet to get their system working again.

I can't believe they didn't address your C earlier. Ugh!

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beebs Enthusiast
beebs
Posted

Why don't you get a scope now to see if the damage has healed and then do a gluten challenge and then another scope to see if there is damage - that way you'd know for sure if it was celiac.

captaincrab55 Collaborator
captaincrab55
Posted

k_c, Were you ever checked for H PYLORI ???

kaki-clam Enthusiast
kaki-clam
Posted
  • Author

k_c, Were you ever checked for H PYLORI ???

I have not been tested for this. I googled it, and it sounds like some of the symptoms i have ...i am going to ask to be tested! Thank you for the suggestion!

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