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Gi Dr. Said I Definitely Have Celiac Disease

jade08

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jade08 Newbie
jade08
Posted

Hello,

I am new and have only posted once. I just have a few questions and hope someone can help.

My GI Dr. said my blood test results had some of the highest numbers he has seen in a few years and that I definitely have celiac disease. He explained that the next step is biopsy. I questioned him about this due to all the posts I have read about negative biopsy results with positive blood work. He stated he would be surprised if mine came back negative.

His main reason for the biopsy is for insurance reasons. My kids will have to be tested for genetics and the disease and insurance will cover this if my biopsy is positive. Does this sound right? Will my kids also have to have a biopsy if their blood work is positive? So Insurance won't cover if it is negative? I am confused. Does insurance not accept positive blood results?

My youngest is 6 and has servere eczema since he was a baby the GI Dr. took one look at him and said he probably has it.

Just a little back ground the only symptom I have is anemia. They have tested me for everthing else but all came back negative. I have always had problems with my iron this is the first real answer to why.

I am worried for my kids

Jade

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ShayFL Enthusiast
ShayFL
Posted

You insurance may REQUIRE biopsy for the genetic testing to be ordered. However, if you dont want a biopsy, you should not be forced to have one. If you can afford it, you can have genetic tests through Kimball or Enterolab yourself. A cheek swab is all. And your little ones could have the cheek swab tests done also. This is if you want to bypass your insurance and self-pay. You do want to know if you children have the genes and definately get their blood tested for Celiac. But really the only true Dx is a gluten free diet.

You HAVE to be on a gluten free diet from now on to stay healthy. Why not put him on a trial to see if the eczema clears up? BUT DO NOT take him off gluten if you want to have him tested via blood and possibly biopsy. Be aware that there are MANY false negatives in children under 7.

It will be easiest for you if everyone in your house is gluten-free in the house anyway. So much easier.

I was not a good candidate for biopsy (high risk for perforation due to adhesions from previous abdominal surgery). So I did the genetics and then the diet. The diet speaks for itself.

You have to just make some decisions on what feels right for you to do.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

A biopsy is an expensive and INVASIVE procedure, requiring anesthesia (which is the most dangerous part or any operation).

If you have even reasonably positive bloodwork, there is no reason for a biopsy unless the gluten-free diet doesn't work for you, and all NON-invasive avenues have been explored.

You do not need your doctor's permission to NOT have a biopsy, any more than you need a doctor's permission to NOT have a tube shoved up or down any body opening.

What the H E double-hockey-sticks is he going to tell you if your biopsy is negative--will he tell you to eat gluten again with high numbers on your blood work? For heaven's sake, if you are making antibodies against gluten, you shouldn't be ingesting it, period. No matter what the biopsy results are.

I strongly suspect that the only involvement of insurance in his recommendation for a biopsy is the fact that they will pay him for it. And I bet he's itching for a chance to be paid to perform this invasive procedure on your children, too.

Besides, there are some reasons you might NOT want celiac disease on your insurance records. People here have been denied insurance coverage (both health and life) because of celiac disease (a "pre-existing condition," etc.)

If it were me, I'd rather pay for the bloodwork for the kids (to see if they are making antibodies--I wouldn't bother with the genetic tests because in this country, they only recognize 2 genes as "celiac," while Europe and Asia recognize 7 genes as "celiac").

There may very well be valid reasons to go ahead with an endoscopy. But these are my reasons not to go ahead with it.

Good luck, whichever you choose.

sallyterpsichore Explorer
sallyterpsichore
Posted

Assuming your insurance does cover the procedure, I would do it. I've had it done twice and it's not really a big deal. My blood test returned back high results (ttg greater than 120--we don't know how high) and I had to have an endoscopy done.

They can then tell what to what extent your guts are damaged <_< and also have something to compare future endoscopies to. I think you're supposed to get them done periodically, but that may just be me as I continue to struggle with symptoms two years later.

What are your reasons for not wanting to have the procedure? Or is it just that you were unsure what your doctor meant by his response?

Best,

Sally

cyberprof Enthusiast
cyberprof
Posted

Jade08, it looks like your biopsy was yesterday, today is the 30th. If so, I hope you went ahead and are all done now. I'm in the crowd that says it's good to have if you are 1) an adult and 2) are still eating wheat and 3) will still go gluten-free regardless of whether the biopsy is postive or negative. With the blood work positive, you shouldn't listen to any doctor that says a negative biopsy counteracts the positive bloods, as positive bloodwork is 100% accurate, IMO.

That being said, a positive diagnosis may help you get help for your kids. Insurance may cover the gene test for them if you have celiac but may not cover the gene test if you don't have a firm diagnosis.

However, although I think a biopsy with an endoscopy is OK for adults, I'm less inclined to recommend it for kids, as it is a more risky procedure for kids than adults- kids have full anesthesia whereas adults are put into a wake/sleep state. My son is gluten-free without the biopsy as the risk was too high just to diagnose celiac.

Let us know your results, and check back. We all care here and hope you and your kids go gluten-free soon. It's not easy but you can do it!

~Laura

P.S. I'm in Bellevue and work in Seattle. Let me know if you want to talk by phone or meet for lunch or a grocery shopping trip.

dilettantesteph Collaborator
dilettantesteph
Posted
Hello,

I am new and have only posted once. I just have a few questions and hope someone can help.

My GI Dr. said my blood test results had some of the highest numbers he has seen in a few years and that I definitely have celiac disease. He explained that the next step is biopsy. I questioned him about this due to all the posts I have read about negative biopsy results with positive blood work. He stated he would be surprised if mine came back negative.

His main reason for the biopsy is for insurance reasons. My kids will have to be tested for genetics and the disease and insurance will cover this if my biopsy is positive. Does this sound right? Will my kids also have to have a biopsy if their blood work is positive? So Insurance won't cover if it is negative? I am confused. Does insurance not accept positive blood results?

My youngest is 6 and has servere eczema since he was a baby the GI Dr. took one look at him and said he probably has it.

Just a little back ground the only symptom I have is anemia. They have tested me for everthing else but all came back negative. I have always had problems with my iron this is the first real answer to why.

I am worried for my kids

Jade

At my son's school they didn't want to go to any efforts to keep gluten away from him without proof of celiac from the doctor. I had removed him from gluten without testing first, not understanding the need to be on gluten to get a positive test. He was throwing up 10 times a day and I was trying whatever I could. I tried to get him back on gluten for testing but he got really sick again. A few days of gluten lead to weeks of illness. Thank goodness we have an understanding and knowledgeable doctor. The stupid vice principal was insisting that he had to be treated for his school phobia! If we ever change doctors or school systems it will be very hard. Next year I have to get him out of a cooking class in which they use flour. It is easy to inhale a bit and get sick. You will be encountering things like this with your children. It might be best to have all the proof you need. The GI's still consider biopsy the "gold standard".

Stephanie

jade08 Newbie
jade08
Posted
  • Author

Thank you everyone for all the advice and help.

I had the procedure yesterday and I had no problems. I was extremely nervous just because I had never had anything like that done.

I ask my doctor before the procedure what will happen if it came back negative and he said he was almost 100% sure it would not.

After he did the procedure he came and talked to me and myt husband. I do not remember much but I do remember him telling my husband that he could see the effects of celiacs in my intestines. He did a couple of biospies. He also said I had some inflamation in a small section of my stomach and the esophagus. He biospied these also. He explained it is probably from the celiacs and the 3 iron pills i am taking, he still cannot beleive I have no symptoms other than low iron.

He told my husband that i should start taking prilosec daily for the inflamation. Since I do not feel this or have any kind of heartburn I am a little confused about this.

my blood tests where all positive and results where >100 on TTG iga and Gliadin iga, Gliadin igg was 21 endomysial ab was positive. allergen igG imminocap gluten 8

I will have the results of the biopsies tomorrow or friday.

I will have an appointment for celiac diet teaching sometime next week. I have already started eliminating gluten from my diet.

Laura I would love to meet and get help and advice on how to cope with this and specificly on how to make sense of food lables.

thanks again to everyone

I am feeling much better about being able to adjust to having Celiacs

jade

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gfpaperdoll Rookie
gfpaperdoll
Posted

You might want to think about taking the Prilosec. Doctors are just too quick to prescribe meds.

If you go gluten-free you should be healing up fairly quickly & will not need the Prilosec. have you googled the side effects?

A goofy doctor of mine mailed me a prescription for low potassium & one of the side effects was death!

I just checked into high potatssium foods & started eating some of those everyday... :)

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