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Diagnosis.....

slpinsd

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slpinsd Contributor
slpinsd
Posted

Finally met with the GI who saw the flattening on my endoscopy, but the biopsy report was negative. She said that she was surprised to see those findings, and showed me the mild scalloping looking folds of the small intestine pictures. It's been 2 months since my biopsy- but if I would have gone in earlier (nurse told me not to), and gone over it with her she would have called the pathologist, because the said report is "substandard"- no good. Now I have the slides in my possession b/c I tried sending them off, so I have to try another pathologist. Anyway, she said what I pretty much knew-that I am in the "grey area"- where she said 10-15% of people are, that are not black and white and she cannot say that I do or don't have Celiac. I KNOW I'm gluten intolerant, but I am still pursuing the biopsy second opinion. I can't not do it now now that the doctor also feels it is inaccurate. Obviously, I 'm at high risk with the double DQ2 copies. She thinks that if it is not Celiac, it is definitely a problem of the small intestine. Most likely, intestinal bacterial overgrowth. Isn't this related to gluten intolerance?

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Guest nini
Guest nini
Posted

Um... it's Celiac. Don't worry about any more testing and go gluten-free. It amazes me how many Dr.s are reluctant to dx the early stages of Celiac. They want to wait until they have full fledged damage, total villous atrophy before they will DECREE a dx of Celiac.

aikiducky Apprentice
aikiducky
Posted

You have a weak positive blood result, a suspicious biopsy, and a positive from enterolab (and I assume, symptoms that made you go for testing in the first place?). I can see that just one of those might still feel like too little evidence, but all those together, and all pointing in the same direction? Are you gluten free yet? :D

Pauliina

slpinsd Contributor
slpinsd
Posted
  • Author

yes- i've been gluten free for 2 months with positive results. The iffy thing is whether or not I have evidenced intestinal damage :)

Guest nini
Guest nini
Posted

you are showing the early signs of damage, I still don't understand Dr.s that want to wait until the patient has major damage before they will dx Celiac. It's ridiculous in my opinion.

From what you've described, you are showing damage, just not the complete total villous atrophy which some Dr.s will only recognize as true Celiac. Trust me, if you continued to consume gluten for a few more years, you would DEFINITELY have total villous atrophy then. Do you really want to wait until then? Most people don't.

julie5914 Contributor
julie5914
Posted

I agree with the above posters, if your small intestine is damaged, it is most likely gluten as the culprit, early stages. However, I understand your wanting to pursue an actual diagnosis. To answer your question, small intestine bacterial overgrowth can come with celiac I believe, if only because your intestines are out of whack and not in balance enough to prevent infection/overgrowth. It is h. pylori. I had mildly pos. results just before my celiac diagnosis, and I felt better on the anitbiotics that they give you to fight it. (I then felt bad again after going off them because I still had celiac and didn't know it yet.) h. pylori causes ulcers - I had very bad abdominal pain and bloating pain before eating, as opposed to afterwards, which I also had because of celiac. It feels like you have a lot of acid in your stomach all the time, and you feel like you want to drink a lot of milk to soothe it. I do not think that h. pylori can flatten your villi like celiac can, but I suppose it certainly does damage the lining if it can cause ulcers.

Rusla Enthusiast
Rusla
Posted

I have to agree with the others. Go gluten-free and forget wasting money and time on lame doctors who can't find their own butt.

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floridanative Community Regular
floridanative
Posted

Just so you know I found out that AIDS has been linked to damaged intestines...I guess that's common knowledge in some communitites but I never knew before reading one of the Celiac books...think Dr. Greens but I mailed that to my Mother today so I can't confirm just now. My money is on Celiac in your case obviously...just shared the info as I found it interesting.

slpinsd Contributor
slpinsd
Posted
  • Author

Yes- I was dx w/h. pylori too- i think related to gluten sens. causing increased intestinal permeability- and treated for that. I felt better after the antibiotics, but seriously, I think gluten-not h.pylori was causing all my symptoms.

Claire Collaborator
Claire
Posted
I agree with the above posters, if your small intestine is damaged, it is most likely gluten as the culprit, early stages. However, I understand your wanting to pursue an actual diagnosis. To answer your question, small intestine bacterial overgrowth can come with celiac I believe, if only because your intestines are out of whack and not in balance enough to prevent infection/overgrowth. It is h. pylori. I had mildly pos. results just before my celiac diagnosis, and I felt better on the anitbiotics that they give you to fight it. (I then felt bad again after going off them because I still had celiac and didn't know it yet.) h. pylori causes ulcers - I had very bad abdominal pain and bloating pain before eating, as opposed to afterwards, which I also had because of celiac. It feels like you have a lot of acid in your stomach all the time, and you feel like you want to drink a lot of milk to soothe it. I do not think that h. pylori can flatten your villi like celiac can, but I suppose it certainly does damage the lining if it can cause ulcers.

I am currently being treated for h.pylori in the stomach lining. Were you retested after your treatment. If not you need to be as pylori is very resistant. There is a urea breath test and a blood test to confirm that the meds actually got it all.

Did you lose weight? How did you tolerate the treatment?. I am not tolerating it well at all. Stomach cramps, unable to eat much and big D worse than a colonoscopy cleanse! Claire

julie5914 Contributor
julie5914
Posted

The breath test showed the presence of h pylori for me. I had the blood test a month after treatment, and it came back normal. I tolerated the antibiotic/acid reducers treatment well - felt much better for those 2 weeks but then went back to feeling bad because I was still eating gluten at the time. I didn't gain or lose weight on the h. pylori treatment. I didn't get the ulcer feelings back after treatment - the burning and pain before meals - instead I just still had celiac pain and bloating after meals. That, of course, was finally resolved with the gluten-free diet. I have lost a few pounds gluten free I think, but it took a while. Mostly it's just nice not to feel huge and in pain.

slpinsd, that's kinda crazy that the doctor would not go ahead with a celiac dx if she knows you are already in the grey area and sees the damage. Hopefully the new pathologist will say, yeah, that's celiac! (Though it's a little weird to want celiac - but I know I was happy when I found out because it answered so many questions.)

num1habsfan Rising Star
num1habsfan
Posted

I had gone for 2 biopsies, (from uh----top and bottom :P ), and they took 3 samples from each biopsy and all of them came back negative. Yet I know that I am intollerant AND allergic to gluten, so I just stick to the diet and say I have Celiac even tho the tests may show otherwise.

I think in some cases we ourselfs are the only people who can give the proper diagnosis.

So if you believe that you have Celiac, and the diet works, then you have it.

No point to this point, just felt like saying that I know how you feel :P

~lisa~

slpinsd Contributor
slpinsd
Posted
  • Author

the h.pylori treatment was not fun. the flagyl tastes nasty, and I had D the whole time, funny thing, i did lose weight during that time, but i don't know if that's' the treatment or the celiac. haven't been retested yet but the dr thinks i probably still have it.

angielackner Contributor
angielackner
Posted

my insides looked like yours apparently and my GI was really surprised when my biopsies came back negative...he was positive that they would show celiac...so what we decided was for me to go gluten free and live like it was positive...he said that the biopsies they take are so small, we coulda "missed"...and apparently like 2-5% of celiacs never test positive.

angie

Claire Collaborator
Claire
Posted

Reply to slpinsd: Big D for me too ever since day four of treatment. Intermittent cramping and enough queasiness so I can't face food. I have lost roughly a pound a day since last Friday. I won't be done until Sunday.

If you think you still have it, you better get rid of it. It causes ulcers and stomach cancer. Claire

slpinsd Contributor
slpinsd
Posted
  • Author

Claire:

what meds are you on for it? i was on flagyl, tetracycline, tagamet. those DO cause D, but your weight loss could be from celiac? were you losing weight before? i will get a breath test, soon!

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