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I Need Advice

Dyan

By Dyan
in Coping with Celiac Disease

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Dyan Rookie
Dyan
Posted

My 11 year old daughter was diagnosed on Monday with Celiacs. She had been to her regular Dr. and he ended up telling me that she was depressed. Well, that didn't sit well with me after awhile. Sadly, I did believe him for 5 months and then one day for no reason, I said to myself "labs make mistakes" and then I started doing more research.

She had a lot of the symptoms of Celiacs so I took her to a different Dr. And this one thought she had an ulcer. Well I insisted she also run a blood test for Celiacs and she did. But she said it to me almost like "well, I know you are wrong but just to prove it, I'll order the test" Well her test for a bacteria that can cause ulcers was negative. But her blood tests for Celiac were positive. When I asked about the follow up biopsy she told me that nothing more was necessary.

Now I am very new to all of this, but in the book I am reading Celiac Disease: A hidden epidemic, this Dr. says a biopsy is the gold standard. She is responding well to being gluten free. My understanding is it will take a few months to get into the GI dr. I don't want to have to put her back on gluten for the biopsy, but I also don't want her to not know for sure what is wrong with her.

Her Dr. told me that these blood tests are very acurate. Is this the same type of info everyone else is dealing with? Do I make the appointment anyway and keep her gluten free or go back on the gluten?

I really appreciate any and all advice. Thank you.

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Kaycee Collaborator
Kaycee
Posted

Hello Dyan,

I think your daughter is lucky she has a persistant and caring mother who wants answers.

Yes my doctor thought a blood test was good enough of a diagnosis for coeliac, he did order a biopsy but I had to wait on the public health system and it took a year to happen, and I had been gluten free for about a year at that stage. Needless to say the result for the biopsy was negative, but my blood test had been positive and the levels of antibodies are going down slowly over time. It would be nice to have that extra test to agree with the blood test. But I will stay on a gluten free diet, as I can remember how sick I was before and how sick I get with a touch of gluten.

It makes it tough, as performing a biopsy later will probably come back negative. But then even having a biopsy now there is no guarantee it will match the blood test results as you can have positive blood test and negative biopsy done at the same time.

Cathy

AndreaB Contributor
AndreaB
Posted

If the blood test is positive, it's positive. There are false negatives though.

If you feel you need the biopsy then you need to keep her on gluten. With her being young she'd probably heal quickly and biopsies are hit and miss as it is. There are doctors out there who will look and the blood test results along with the positive dietary response and say nothing more is needed.

If she suffers from depression while on gluten it may be best to keep her off of it and skip the biopsy. She does have the positive results and the dietary change. Hopefully that will be all that she needs to stay on the diet for life.

Darn210 Enthusiast
Darn210
Posted

I think it depends on the doc . . . my kid's doc would take the positive blood test and positive results from the diet. I think some people (who may be in denial) need the positive biopsy to convince themselves to stay on the diet. Also, some may need an official diagnosis when dealing with the school system. However, it sounds like you could get that from the doc that did the blood test.

Good for you for following your instincts!! And welcome to the board! :)

FootballFanatic Contributor
FootballFanatic
Posted

If I was in your position, I would give the gluten-free diet a shot, and see if it works (knowing it can take quite a while to heal, but there should be a difference within a week or so; for example, I am not better yet after 4 months but I can tell that eliminating gluten made a difference)

Also if you are going to start with the gluten free diet, learn all the rules. I found out a few months into this that my meds had gluten in them, because I trusted my pharmacist and didn't call the manufacturer.

Best of luck.

buffettbride Enthusiast
buffettbride
Posted

You can consider it a positive diagnosis with the blood tests so your doctor is not entirely wrong. However, there are reasons why the biopsy could be helpful as well--such as to assess the damage, etc. Plus, it is nice to have that "gold standard" diagnosis. I'm definitely happy we did it for my daughter, but it definitely isn't something that is for everyone.

Of course, there are risks associated with an endoscopy for kids as well as adults. My daughter was 9 when she had her endoscopy (she had hers before the blood tests, actually) and she had absolutely no problems with it at all.

I would suggest going to a pediatric GI specialist such as at a Children's Hospital in your area, if possible.

As a side note, my daughter is very proud of the pictures she has of her duodenum and tummy from the endoscopy, they are actually hanging in her classroom at school. ;)

Dyan Rookie
Dyan
Posted
  • Author

Thank you everyone for your words of support. She has been gluten free since Tuesday. Before that she has had a stomach ache all day everyday for 6 months. She would say that the pain was between an 8 and 10 all the time. Now with just a few days of no gluten her pain is a level 5. I can tell her energy has improved (along with her mood swings).

I cannot get her into the GI until the end of Jan. So I think I am going to just skip the biopsy.

Thank you, I know I will be reading a lot of old posts over the next few days. This forum is wonderful.

Dyan

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JNBunnie1 Community Regular
JNBunnie1
Posted
Thank you everyone for your words of support. She has been gluten free since Tuesday. Before that she has had a stomach ache all day everyday for 6 months. She would say that the pain was between an 8 and 10 all the time. Now with just a few days of no gluten her pain is a level 5. I can tell her energy has improved (along with her mood swings).

I cannot get her into the GI until the end of Jan. So I think I am going to just skip the biopsy.

Thank you, I know I will be reading a lot of old posts over the next few days. This forum is wonderful.

Dyan

I think if I were in your position I'd skip the biopsy too. The thing is that there is no false positive blood test, if it says you have it then you have it. The biopsy is considered the 'gold standard' and I'm not sure why, as there is no risk of false positive through blood testing. Personally, I think it's just a way for hospitals to make more money, but I'm cynical about that sort of thing. There's no reason to doubt her blood tests, though.

kbtoyssni Contributor
kbtoyssni
Posted

I don't see any reason for a biopsy, either. You've got a positive blood test plus dietary response. Biospies aren't 100% accurate, either, so you'd also have to weigh what you'd do if you got a negative biopsy - would you keep her gluten-free? If you do want to get a scope she has to be on gluten which it sounds like you'd be reluctant to do.

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