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Update...sierra's Mommy Has...

Sierra's Mommy

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Sierra's Mommy Apprentice
Sierra's Mommy
Posted

Celiac Disease! Well, "not for sure", according to the clueless internal medicine doctor I saw today. So, many of you may remember that my 6 year old was diagnosed with Celiac after two positive blood tests and a biopsy confirmed it last month. As a matter of routine, my husband and I were tested. My Ttg and EMA both came back "interpreted as positive". However, in speaking with my internal medicine doctor today, he said, "Well, geez, you'd think we would have stumbled across this sooner over the course of your 44 years!"

He went ahead and ordered the biopsy--only after he dramatically went on and on about how HORRIBLE the gluten-free diet is, and he really doesn't think I have it. "But I'll believe the biopsy!"

Just because I don't have chronic diarrhea every day, like my daughter did, doesn't mean I don't have celiac disease. I have had the following symptoms: diagnosed as "spastic colon" at age 22, various episodes of diarrhea as a child (mother determined that I "couldn't handle chocolate") and intermittently as an adult, hair loss, fatigue, miscarriage, infertility, imbalance, skin disorders...oh, and two positive blood tests.

It's not like I want the dang disease, but puleeze....two positive blood tests and a daughter who was recently diagnosed...what are the odds that I don't have it? And when I asked him, "If I don't have celiac disease, what other disease would produce the positive results?", he simply said, "I don't have an answer for that."

Oi vey! It really is true, what I've read on this site. Quite often, we are more educated about the disease than the doctors. I'm making an appointment for an endo with a GI, who specializes in celiac disease, tomorrow. Just had to vent.....

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nasalady Contributor
nasalady
Posted
Celiac Disease! Well, "not for sure", according to the clueless internal medicine doctor I saw today. So, many of you may remember that my 6 year old was diagnosed with Celiac after two positive blood tests and a biopsy confirmed it last month. As a matter of routine, my husband and I were tested. My Ttg and EMA both came back "interpreted as positive". However, in speaking with my internal medicine doctor today, he said, "Well, geez, you'd think we would have stumbled across this sooner over the course of your 44 years!"

He went ahead and ordered the biopsy--only after he dramatically went on and on about how HORRIBLE the gluten-free diet is, and he really doesn't think I have it. "But I'll believe the biopsy!"

Just because I don't have chronic diarrhea every day, like my daughter did, doesn't mean I don't have celiac disease. I have had the following symptoms: diagnosed as "spastic colon" at age 22, various episodes of diarrhea as a child (mother determined that I "couldn't handle chocolate") and intermittently as an adult, hair loss, fatigue, miscarriage, infertility, imbalance, skin disorders...oh, and two positive blood tests.

It's not like I want the dang disease, but puleeze....two positive blood tests and a daughter who was recently diagnosed...what are the odds that I don't have it? And when I asked him, "If I don't have celiac disease, what other disease would produce the positive results?", he simply said, "I don't have an answer for that."

Oi vey! It really is true, what I've read on this site. Quite often, we are more educated about the disease than the doctors. I'm making an appointment for an endo with a GI, who specializes in celiac disease, tomorrow. Just had to vent.....

Feel free to vent away....at least you found out sooner than I did! I was tested because my *granddaughter* was diagnosed with celiac disease! :lol:

And yes, frequently we are more educated than the doctors, because this is a "rare" condition (at least, the doctors are taught in medical school that it is rare). We educate ourselves because our health is at risk....we want to know everything! General practitioners usually have a bare minimum of information on celiac disease, which may be outdated. Gastroenterologists tend to be better informed, but can still be remarkably clueless. I was lucky...my GI doc is great!

If your bloodwork is positive, and you have all of the symptoms that you listed above, and your daughter has celiac disease, then you have celiac disease. False positives are rare in the blood tests for celiac disease. False negatives are very common, as are falsely negative biopsies. One of the moderators once explained it this way:

A negative biopsy really doesn't prove much.

A number of samples are taken from the lining of the upper small intestine. The number is usually rather small. The damage may be spotty in many cases.

An analogy which may help understand the accuracy of the biopsy follows. It is graphic, but effective.

Imagine that your front lawn is 25 feet wide and 10 feet deep. That is 250 square feet of grass. Now imagine that you go onto your lawn and choose, at random, 12 3-inch square samples. In none of those samples, which total less than 1 square foot out of 250, do you find any dog feces. Well, then, you can declare that your lawn is free of dog sh!t, can't you? Of course you can't.

A negative on the biopsy does not prove that there is no damage, it only means that they did not find any in the small sample. The fewer samples taken, the more likely it is that damage will be missed. Most times a lot less than twelve samples are taken, and they are all taken from within the first few inches of the small bowel.

And please don't believe that the gluten-free diet is horrible. Remember, there are so many things that are naturally gluten free: meat, poultry, seafood, eggs, fresh fruits and vegetables, rice, potatoes, etc. There are many ethnic cuisines that lean towards gluten free cooking. Three that come to mind immediately are Mexican, Indian, and Thai.

I've discovered that it IS more work...I have to cook a lot more. I've only been gluten free since November, but I've found that I can make virtually ANYTHING gluten free. We just recently learned that my husband has celiac disease too. Our entire family has now gone gluten free and our two kids at home have seen their eczema and keratosis pilaris clear up completely.

Best of luck to you!

JoAnn

happygirl Collaborator
happygirl
Posted
two positive blood tests and a daughter who was recently diagnosed

The chances certainly lean toward Celiac! :)

Make sure you keep eating gluten until your biopsy, and get a copy of your bloodwork and the biopsy results.

Jestgar Rising Star
Jestgar
Posted
The chances certainly lean toward Celiac! :)

Make sure you keep eating gluten until your biopsy, and get a copy of your bloodwork and the biopsy results.

And good for you for being vigilant about your health.

Sierra's Mommy Apprentice
Sierra's Mommy
Posted
  • Author

He doubts "I have Celiac disease". Many of you may remember that my 6 year old was diagnosed with Celiac after two positive blood tests and a biopsy confirmed it last month. As a matter of routine, my husband and I were tested. My Ttg and EMA both came back "interpreted as positive". However, in speaking with my internal medicine doctor today, he said, "Well, geez, you'd think we would have stumbled across this sooner over the course of your 44 years!"

He went ahead and ordered the biopsy--only after he dramatically went on and on about how HORRIBLE the gluten-free diet is, and he really doesn't think I have it. "But.... I'll believe the biopsy!"

Just because I don't have chronic diarrhea every day, like my daughter did, doesn't mean I don't have celiac disease. I have had the following symptoms: diagnosed as "spastic colon" at age 22, various episodes of diarrhea as a child (mother determined that I "couldn't handle chocolate") and intermittently as an adult, hair loss, fatigue, miscarriage, infertility, imbalance, skin disorders...oh, and two positive blood tests.

It's not like I want the dang disease, but puleeze....two positive blood tests and a daughter who was recently diagnosed...what are the odds that I don't have it? And when I asked him, "If I don't have celiac disease, what other disease would produce the positive results?", he simply said, "I don't have an answer for that."

Oi vey! It really is true, what I've read on this site. Quite often, we are more educated about the disease than the doctors. I'm making an appointment for an endo with a GI, who specializes in celiac disease, tomorrow. Just had to vent.....

Lisa Mentor
Lisa
Posted

Oi Vey! is right.

I am constantly puzzled why most of the medical community knows so little about Celiac Disease. Here is some information on the Serologic Testing for Celiac:

Open Original Shared Link

If you would like to post your blood panel result and your pathology report from your biopsy, we would be more than glad to interpret for you. Celiac has over 200 symptoms and not everyone has the same. And many here have been diagnosed with Celiac only secondary to other conditions such as thyroid issues, diabetes, arthritis, etc...

Please consider yourself diagnosed for you and your daughter and stay on the diet. Once you get the hang of it, it really is not that difficult. This is the best place to learn the "facts".

Welcome!

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