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cyclinglady

Member Since 31 Mar 2013
Offline Last Active Yesterday, 09:18 PM
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Posts I've Made

In Topic: Question About Symptoms Taking The Gluten Challenge

Yesterday, 01:45 PM

I understand. Good luck with your challenge!

In Topic: Please Give Opinion On How To Proceed With Positive Ttg

Yesterday, 12:41 PM

Are we related or what? I have Hashi's, celiac disease and my only symptom at the time of my diagnosis was anemia -- no tummy issues. My husband has been gluten free for 13 years but no formal diagnosis (he went gluten free per the poor advice of my allergist and his GP). Autoimmune disorders run rampant in both our families.

I had the intestinal biopsy because I could not believe that both us would need to be gluten free! I had gone to a GI for a routine colonoscopy, so two scopes was no bother! I am glad of the formal diagnosis. I had a Marsh Stage IIIB damage (moderate to severe) and I am glad that I have this on record for future scopes if needed. Nice to know that SIBO and cancer was not detected. Makes it easy for my kid to get tested every couple of years. So far, she is clear. I am encouraging the rest my extended family to get tested even when symptom free!

Since my diagnosis, I have fractured two vertabrae. Again, because of my celiac disease dx, getting bone scans approved by insurance is a snap!

Keep eating gluten if you decide to do the biopsy.

Welcome to the club!

In Topic: Osteoporosis Medications And Celiacs

Yesterday, 10:41 AM

Ah, perhaps it is time for the meds. Let's see if others respond with positive reviews of a specific drug.

In Topic: Gene Testing

Yesterday, 09:43 AM

What tests were actually run? Be sure to get copies. Often, just the initial screening test is run -- not the complete panel. If I had had just the initial screening, I would not have been diagnosed with celiac disease. U the doc should take up to six biopsies. The small intestine is vast and damaged areas can be missed!

In Topic: Test Results...help!

Yesterday, 09:39 AM

What? Your PED GI needs to attend a current celiac conference.

i never had the genetic test. My doc just ran the complete panel right from the start and luckily one of the tests was positive and it was not the TTG! If you do not have the gene (exceptions do apply but are rare), then a celiac disease diagnosis is out.

While we are talking about gene testing, let's review this. Some 30% of folks carry this gene. Do they all have celiac disease? No! Just a few.

For INITIAL screening, the TTG is run and the IGA deficiency is checked. But if they are negative/normal, the doc can run the rest of the celiac tests. They usually run just the initial test because it is cheaper and insurance may not pay for a complete panel right off the bat. Even the University of Chicago who offers free screening does not run the complete panel unless further issues warrants it. It is just a way to save costs.

My family members have had to insist on a complete panel because I did not test out normally. If they just had the TTG And the IGA deficient tests, their diagnosis might have been missed.

He just might not have celiac disease. But unless you at least have all the current tests taken (including a biopsy), you can not rule out celiac disease. He will need a definitive diagnosis, in order to heal whether he has celiac disease or something else!

And the general blood work? Make sure ferritin ( iron stores) were run. I always tested normal on iron intake and even my hemoglobin was okay (I had another anemia but that is another story) It was the inability to keep iron stores that my GI doc noticed.

Finally, I am not a doctor. But I am an advocate for my health and my family. I have to be. Doctors are human (my GP has 2,000 patients assigned to her) and can make mistakes. Do not give up!