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Reasons

countryfairy

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countryfairy Newbie
countryfairy
Posted

A few years ago, I was diagnosed with celiac. I never really thought I had it. I now have a chance to prove myself right. This Thursday I have an appointment with my gastrointerologist, and I am going to suggest the test that is quite popular, from what I have heard. Apparently you go off the diet and eat whatever you want for six months, when you go back and get another endoscapy (sorry about spelling) to confirm the diagnosis. By the way, I am 14 and under parental domination. Well, I always try to be prepared. My father wants to try it, my mother does not. And my doctor may try to discourage it. So I want to know all the reasons for and against this procedure so, if necessary, I can talk my way into getting it done. So if any of you know anything about it (and aren't wondering about my mental health by now!) please tell me what I should be prepared for (both sides of it so I can come up with counterarguments). Thanks in advance,

Paige

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countryfairy Newbie
countryfairy
Posted
  • Author

Will no one reply? I only have till Thursday, and I have been searching the web all day...

KaitiUSA Enthusiast
KaitiUSA
Posted

Personally, I am against it. You were diagnosed...you have it...thats a fact. How were you diagnosed? There are some blood tests that are very specific for celiac and have very little false positive rates. Biopsies only confirm damage done...if a biopsy comes back negative that just means there is not damage done yet...that does not mean you do not have it.

I went through a denial stage where I thought I didn't have it and all and then I went and looked at my tests and so forth..I had to let it sink I guess.

You are very lucky that they caught this early because alot of doctors are not knowledgable in this...this disease is usually misdiagnosed and overlooked so the fact they found that speaks alot.

Cheating on this diet can literally knock years off of your life. It can cause cancer, osteoporosis, diabetes, liver/gallbladder/kidney/pancreas complications, nerve disorders , etc...it is very important..you really need to stay gluten free.

countryfairy Newbie
countryfairy
Posted
  • Author

Well, thanks for answering. What you said makes a lot of sense. But I've had a blood test, and it said whether I'd had a regular intake of gluten for the past year (which I had, I know I'm not supposed to, but I did anyways), and it still came back negative. It's done that for the past two years, and I've only had it two years.

KaitiUSA Enthusiast
KaitiUSA
Posted

So how did they diagnose you? Did your blood tests ever come back positive. You have to stay on gluten heavily for at least 3 months before blood tests or biopsies.

countryfairy Newbie
countryfairy
Posted
  • Author

No, they never said positive. What do you mean by heavily? I probably had 1-3 gluten products per day (bagels, pizza, breaded shrimp...). Naturally, I didn't have gluten evry day, but many times I'd have a few cupcakes, or graham crackers or something.

KaitiUSA Enthusiast
KaitiUSA
Posted

Did you have the symptoms or anything? Why did they suspect celiac? Why did they give you a diagnosis?

Being on gluten heavily is equivalent to about 2 pieces of bread a day but if you were on a regular diet before being tested then that would be good enough.

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countryfairy Newbie
countryfairy
Posted
  • Author

No, no symptoms.

They said it was common among diabetics, especially in my age group.

Also, they apparently go by a number; a positive number indivates celiac, and most people are 4-6 I think. I was .05 or something.

And, yes, I probably had the equivalent of 2 pieces of bread a day.

KaitiUSA Enthusiast
KaitiUSA
Posted

-Anti-Gliadin (AGA) IgA

-Anti-Gliadin (AGA) IgG

-Anti-Endomysial (EMA) IgA

-Anti-Tissue Transglutaminase (tTG) IgA

-Total Serum IgA

The above tests are the tests you should have had done. Do you know what you tests you had done?

Some celiacs are IgA deficient so that can cause IgA levels to be down when they otherwise should have been positive.

Diabetics do sometimes have celiac but not all. Celiacs also do not have to have symptoms so that can make it hard to diagnose too.

plantime Contributor
plantime
Posted

If you already have a positive diagnosis from a doctor, there really is no reason to go for more tests to see if you have celiac. If you do go on the gluten for 3-6 months just for an endoscopy, it is my opinion (humble or vaunted!) that you are wasting money and your life/health/time.

For me to eat gluten, just a teenytiny amount, means two weeks of physical pain, depression, and psychosis. I cannot now imagine going through it for 3-6 months, just because I want a test result to be negative!

If you can find out what tests were used to get a diagnosis, we can let you know if we think the test was accurate or not.

celiac3270 Collaborator
celiac3270
Posted

I'm also strongly against gluten challenges. After a diagnosis, it serves no purpose to torture you for another six months just to tell you, again, that you have celiac disease. And the results don't lie.....

Just wanted to respond as I'm another person against the gluten challenge ;)

KaitiUSA Enthusiast
KaitiUSA
Posted

Yea..doctors had to have diagnosed you somehow...they just don't go around handing out a celiac diagnosis.

I am against is as I previously stated.

You really need to follow the diet ...as I understand you saying you are not...you need to be. Celiacs can have very serious life threatening complications if you do not follow it.

Peaches503 Newbie
Peaches503
Posted

Hi,

I also agree with celiac3270 and Kaiti. I don't think doing the gluten challenge is a good idea. A diagnosis is a diagnosis, whether you have symptoms or not. The gluten challenge is not worth the damage it could do to your body. Besides, being gluten-free is beneficial to anyone anyway. Good luck with all of this.

-Peaches

Emme999 Enthusiast
Emme999
Posted

So anyway... I haven't had the biopsy yet but the tTG was positive (and some other test she did). However, I had an ELISA food allergy test about a month earlier that showed my allergic reaction to wheat was *low*. I wonder if it came back that way because I had been on a *really* low grain diet prior to the test. Hmm... it kind of ticks me off though that it didn't show up on a food allergy test! What the (*$#^&???

What is the point of the biopsy anyway? I mean, my doctor said the blood tests showed a 95-100% chance that I have celiac disease, so why do I have to have the biopsy at all? With the osteoporosis, dental problems, and digestive troubles I have when I eat grains - I don't really know why I should need *another* diagnosis.

Is it a good idea to find out how much damage has been done to your villi? Does the biopsy also detect cancer or something? I'm very confused, and kind of scared about going through the procedure. Kind of terrified actually. The whole "conscious sedation" thing still has the word "conscious" in it! Yikes!

celiac3270 Collaborator
celiac3270
Posted

Even on a full wheat diet, it wouldn't have shown up. celiac disease is an intolerance, not an allergy, so unless you ALSO have an allergy to wheat, it wouldn't show up on the allergy test.

KaitiUSA Enthusiast
KaitiUSA
Posted

Bean-

A biopsy just shows how much damage there is to the intestines(if any)

I would not think you would need a biopsy unless your doctor just wants to do one to see how much damage you have. I did not get a biopsy after positive bloodwork because the doctor felt I didn't need one.

Allergy testing is completely different and will not pick up on celiac...that has its own testing.

plantime Contributor
plantime
Posted
So anyway... I haven't had the biopsy yet but the tTG was positive (and some other test she did). However, I had an ELISA food allergy test about a month earlier that showed my allergic reaction to wheat was *low*. I wonder if it came back that way because I had been on a *really* low grain diet prior to the test. Hmm... it kind of ticks me off though that it didn't show up on a food allergy test! What the (*$#^&???

What is the point of the biopsy anyway? I mean, my doctor said the blood tests showed a 95-100% chance that I have celiac disease, so why do I have to have the biopsy at all? With the osteoporosis, dental problems, and digestive troubles I have when I eat grains - I don't really know why I should need *another* diagnosis.

Is it a good idea to find out how much damage has been done to your villi? Does the biopsy also detect cancer or something? I'm very confused, and kind of scared about going through the procedure. Kind of terrified actually. The whole "conscious sedation" thing still has the word "conscious" in it! Yikes!

Aaahh, Bean!! {{{hugs}}}!! The endoscopy and biopsy are not that bad at all. "Conscious Sedation" means that you are not put completely under, and do not require things like a respirator and something to keep your heart beating. I don't remember anything of mine after the throat spray until I woke up at home in my recliner. Perhaps the doctor wants to know how much damage you have, or if there is something else causing digestive problems for you. Ulcers and ulcerative colitis come to mind. Celiac will not show up at all on an allergy test. They are two distinctly different problems, with different tests required for diagnosis, but the same "cure"! :lol:

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