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Begining To Doubt Cd

VydorScope

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VydorScope Proficient
VydorScope
Posted

Welp my son diagnosed with celiac disease, and the diet has done wonders for him, and I am very sure of his diag... For a while I thought I might have celiac disease too since I am anemics with no cuase, and I get the pains, gas, etc. In fact my GI doc said "if you were a test question, the aswer would be an easy celiac disease". They only did one blood test, which was negative, and the bipsoy was not postive. So I tired the diet... none of my symptons have change now... and its been 2 months. WIth how fast my toddler turned around I think that its probably not celiac disease causing my anemia and stuff... is 2 months to soon to give up?

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granny Rookie
granny
Posted
Welp my son diagnosed with celiac disease, and the diet has done wonders for him, and I am very sure of his diag... For a while I thought I might have celiac disease too since I am anemics with no cuase, and I get the pains, gas, etc. In fact my GI doc said "if you were a test question, the aswer would be an easy celiac disease". They only did one blood test, which was negative, and the bipsoy was not postive. So I tired the diet... none of my symptons have change now... and its been 2 months. WIth how fast my toddler turned around I think that its probably not celiac disease causing my anemia and stuff... is 2 months to soon to give up?

Vincent,

I'm not an expert by any means but, I've read that it takes adults a lot longer to heal than children. The fact that your biopsy was not positive may be that they didn't get the biopsy at the place where the damage was. There are also lots of false neg. on blood tests. I don't think 2 mo. is long enough a test for an adult and hope you will give it more time. I've been gluten-free since Nov. 2003 and I still have problems at time, esp with gass and diarrhea. Hang in there and give it more time.

Are you on any meds, prescription or OTC? Check these for gluten; check vitamins ect. and all products that can come in contact with the mouth, lotion, shampoo etc. The reason I mentioned this is because I took an anti-diarrheal prescription for a yr. before someone mentioned here that it containing gluten.

It was prescribed by the doc that diagnosed me so I didn't think to check it. It's a tough job to find all the gluten but so worth the trouble. granny

KaitiUSA Enthusiast
KaitiUSA
Posted

That's not enough time to expect symptoms to go away. Also have you had gluten free products such as soaps and shampoos too?

Did you have a full celiac panel done or only certain tests? If so, what tests?

If you had a full celiac panel and a biopsy come back negative then chances are you do not have it yet or the levels are too low to be detected and so forth.

Have you had other intolerance testing done?

Personally, I would give the diet more time. Maybe you have a gluten intolerance and not full blown celiac disease but its worth staying on the diet to see if it helps.

VydorScope Proficient
VydorScope
Posted
  • Author
That's not enough time to expect symptoms to go away. Also have you had gluten free products such as soaps and shampoos too?

Did you have a full celiac panel done or only certain tests? If so, what tests?

If you had a full celiac panel and a biopsy come back negative then chances are you do not have it yet or the levels are too low to be detected and so forth.

Have you had other intolerance testing done?

Personally, I would give the diet more time. Maybe you have a gluten intolerance and not full blown celiac disease but its worth staying on the diet to see if it helps.

Only 1 of the four blood tests, doc said insurance will not cover all 4. And the house is completely gluten-free, if not my son's diapers would let me know thats for sure! LOL

Guest nini
Guest nini
Posted

Vincent, I would def. give it more time to see if it helps. I'm going on 2 1/2 years gluten-free, and I'm still having symptoms. Granted I'm a lot better than I was, but it's taken a while. I also felt a bit worse before feeling better, I think I went through a kind of gluten withdrawal and that made it seem like I wasn't getting better. I can't remember the whole timetable of when I really started seeing a major improvement in my symptoms, but it was def. more than 2 months.

Also, I too believe that most people cannot tolerate gluten even if they don't have celiac YET, but look at all of the "mysterious" health issues that so many people are dealing with. I betcha if they eliminated gluten (and possible certain allergens) that so many heath issues would go away. But wheat is so prevalent in our society and is supposed to be healthy for you that most people won't even consider that wheat/gluten is the culprit.

KaitiUSA Enthusiast
KaitiUSA
Posted
Only 1 of the four blood tests, doc said insurance will not cover all 4. And the house is completely gluten-free, if not my son's diapers would let me know thats for sure! LOL

The complete panel actually has 5 tests. What test did you have done? tTG? EMA? IgA? IgG?

If you had the IgA done and that came back negative that can be false because alot of celiacs can have IgA deficiency.

Also, the biopsy is a good diagnosis tool if there is damage but it won't necessarily rule it out because there could be no damage yet or sporadic damage that they missed.

The tTG may actually take place of the biopsy with diagnosis in the near future and the tTG is the most specific for celiac but really having the full panel is the most ideal thing.

Have you thought about maybe an Enterolab?

What about maybe getting a gene test as well?

I would definitely stick with the diet longer because there is a chance you have it. It just takes some time for symptoms to go away sometimes. Took me 3 months to feel alot better then about 8 months to get back to normal.

VydorScope Proficient
VydorScope
Posted
  • Author

I am a stupid idiot. :( Decide to eat some cake and see what happend. :( Now Im in pain, and etc. Stupid Stupid Stupid Stupid. Hope my toddler son grows up smarter then me. :(

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Guest nini
Guest nini
Posted

you are only human Vincent. Not stupid, OK?

{{{{{{{{CYBER HUGS}}}}}}}}}} Hope the pain goes away soon.

VydorScope Proficient
VydorScope
Posted
  • Author
Have you thought about maybe an Enterolab?

What about maybe getting a gene test as well?

Many times... but I can not afford it. :(

celiac3270 Collaborator
celiac3270
Posted

Don't give up! Two months is often too short to see improvement--it could be six months to feel better or even longer. Don't give up because in the end, you'll probably feel better than when you started. Not to mention that wheat's not good for anyone, and you will better understand your son's situation, thus being a stronger support system than you otherwise might have been.

KaitiUSA Enthusiast
KaitiUSA
Posted

Hang in there!

I'm sure you will start to feel better. It sounds like you already react when you have gluten. And your not stupid...everyone has those mistakes..we just have to learn from them(and it took me a while to learn from them)

VydorScope Proficient
VydorScope
Posted
  • Author

*UGH* Welp just out of the bathroom long enough to tell you I BELIEVE! :(

Guest nini
Guest nini
Posted

I can totally sympathize. I've spent the greater portion of this evening in the bathroom. This has been going on all day, I think I got glutenened from my breakfast at Mickey D's... side order of sausage and hash browns... I get this same order quite frequently and haven't had any problems before today.

Carriefaith Enthusiast
Carriefaith
Posted

It sometimes takes a while to feel better. I know it's hard because after like 3-4 months I was at the doctors office complaining, "I'm not better :unsure: "? Most of my symptoms were gone after 1 year and I am still not 100%

I hope you feel better soon. Don't feel stupid about the cake. I think about cheating sometimes, and although I never would, because I think I would end up in the hospital, the temptation is there, especially when someone starts eating my favorite gluten foods -- ah hemmm! PIZZA and Chinese Food -- in front of me when I'm starving.

VydorScope Proficient
VydorScope
Posted
  • Author
I hope you feel better soon. Don't feel stupid about the cake. I think about cheating sometimes, and although I never would, because I think I would end up in the hospital, the temptation is there, especially when someone starts eating my favorite gluten foods -- ah hemmm! PIZZA and Chinese Food -- in front of me when I'm starving.

Well in all serousness. I realy was not cheating, I needed to know. My GI doc told me "If you were a test question, the answer would be celiac disease" but he refused to dx me with it. My general practictioner wont do anything if the GI doc does not bless it first, so I was fraily stuck. I wanted to do the rest of the blood test, or entrolab.. but since insurance wont cover it, that was out.

But now I guess I know!

So back to the gluten-free bandwagon for me.....

William Dickey, PhD, MD Newbie
William Dickey, PhD, MD
Posted

ok, its sounds like your gut symptoms may be gluten related but what about your anemia?

Is it iron, folate or B12 deficient, or a mix of two or more?

I'd have thought if the anemia was due to celiac disease you'd have some abnormality on your duodenal biopsies.

Have you been checked for inflammatory bowel disease- similar symptoms, may (sometimes) respond to removal of wheat- i.e. colitis or Crohn's?

VydorScope Proficient
VydorScope
Posted
  • Author

Its Iron Deficent Anemia. And I have had 2 years worth of tests now... I have to ask the doc on specific tests any more, I cant keep track! :huh::blink: I do rember her saying its not Chrons though....

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