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Questions About 16 Year Old


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#1 michelepta

 
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Posted 12 October 2012 - 06:24 AM

Starting last October my 16 year old daughter started having nausea every couple days for no reason. She was also breaking out into hives and having anemia symptoms. Testing revealed anemia and Autoimmune Urticaria (hives). She also has Hoshimotos Thyroid disease-diagnosed age 9.

We fixed the anemia, got control of the hives with medicine, and got her thyroid back in balance (when you have no iron your body does not digest the thyroid medicine very well.) She tested positive for anti glaidin Igg (level like 40), but negative for anti-glaidin IGA last November. Her stomach issues remained after everything else was under control. In July she started waking up with pain in her mid abdomen.

Went to the Gastro who ruled out H Pylori and put her on Zantac (does nothing). I requested a celiac panel again since she has an Uncle and Grandfather who have it. My husband had negative blood work, but had gastro symptoms that went away on a gluten free diet. Now if he has even a tiny sip of beer he stays close to the bathroom. (He no longer is tempted by any gluten.)

After a two month gluten challenge we now have her blood work results which are negative. Anti-IGA Ttg <1 <4Um/l with a positive for Immunoglublin A.

The day after she took the blood test she voluntarily went completely gluten free for what she says is only going to be six weeks. It has been 10 days and no gut pain, no nausea. (She stopped the Zantac.) She sort of glad-sad that it worked. Glad not to have stomach problems-devestated that she might have to give up gluten.

Here is my problem. I pretty much demanded that the Gastro check her Ferritan count and run a CBC for anemia since we were drawing blood anyway. He did not want to since she was last checked in July and both were good. I admitted that it seemed over kill, but I really thought she was looking too pale again. It turns out her Ferritan is down from 32 to 2 (should be at least 10) and she is slightly anemic again. This is despite me cooking in all iron pots, taking a multi-vitamin with her daily allowance of iron, eating iron fortified cereal everyday, and me checking all the labels for the most iron.

This Gastro says that he thinks her anemia problems have nothing to do with her digestive complaints and he feels she is a "nervous teenager." When I told him she went gluten free the day after the test and she was feeling better he said that "some teens like the special attention a diet gives them." I asked him what he thought was causing the anemia and he said, "Maybe her Thyroid". This was checked in September and was fine-he had those lab results. So obviously I will not be seeing him again.

If she is just gluten intolerant it should not cause anemia, right? Do I have her start eating gluten again so I can find a Gastro who will do a biopsy without positive blood work? I am worried that after her six week imposed gluten free experiment she will go back to gluten.

Thanks for the help.
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#2 GottaSki

 
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Posted 12 October 2012 - 06:57 AM

I try not to say this often, but you need a different gastroenterologist!

- Positive Gliadin IgG
- Anemia that doesn't improve with supplementation
- Family history of Celiac Disease
- Improved symptoms gluten-free!!!!

"some teens like the special attention a diet gives them." :angry:

If it looks like a duck and quacks like a duck, it must be an elephant wanting special attention :blink:

You can try contacting a local celiac support group to find the best celiac doc in your area. I'd also verify that other IgG tests were run - some people test positive on IgG rather than IgA - even with sufficient total IgA.

Since she has been gluten-free for some time, I see no reason to start eating it again until you are certain you are going to run more tests. Some celiac savvy doctors will diagnose based on the information you have provided here.

Your intuition is spot on. This GI's knowledge of Celiac Disease is shameful.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#3 michelepta

 
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Posted 12 October 2012 - 07:23 AM

I try not to say this often, but you need a different gastroenterologist!

- Positive Gliadin IgG
- Anemia that doesn't improve with supplementation
- Family history of Celiac Disease
- Improved symptoms gluten-free!!!!

"some teens like the special attention a diet gives them." :angry:

If it looks like a duck and quacks like a duck, it must be an elephant wanting special attention :blink:

You can try contacting a local celiac support group to find the best celiac doc in your area. I'd also verify that other IgG tests were run - some people test positive on IgG rather than IgA - even with sufficient total IgA.

Since she has been gluten-free for some time, I see no reason to start eating it again until you are certain you are going to run more tests. Some celiac savvy doctors will diagnose based on the information you have provided here.

Your intuition is spot on. This GI's knowledge of Celiac Disease is shameful.


I love this idea of the IGG being positive, but not the IGA. It would totally explain why my negative Glaidin IGA, with sufficient IGA, husband had such a great response to the gluten free diet and such a quick and brutal response when he consumes gluten now after being gluten free. If this was me, I would just not eat gluten (i am 95% gluten free just in husband support.) But my daughter would really like to know-Type A, straight A's, should grow up to be an engineer.

I think I might do Enterolab just so she has a piece of paper from some place and so we can have the gene test done.
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#4 GottaSki

 
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Posted 12 October 2012 - 07:43 AM

But my daughter would really like to know-Type A, straight A's, should grow up to be an engineer.

I completely understand. My 18 year old son (also born to be an engineer and is presently an engineering major) decided to go gluten-free at 15 - a few months after I was diagnosed - his tests were negative, but had some serious health problems. He improved gluten free - doubted the need to remain so a few times - each time the reactions got worse to the point he no longer questioned the need to be gluten-free - I think that took about 6 months. Knowing he had at least one celiac gene did help in his decision to go gluten-free - I didn't have my kids gene tested because I have a double pair plus one, so all my kids have at least one celiac gene.

Keep helping her find answers :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#5 GFinDC

 
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Posted 12 October 2012 - 08:15 AM

Agree 100%.

Hashimoto's thyroiditis is associated with celiac disease also. They are both autoimmune diseases. IMHO they (doctors) should test anyone with Hashimoto's for celiac disease. But they don't.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#6 nvsmom

 
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Posted 12 October 2012 - 09:10 AM

Wow. That's really disappointing to hear about gastros like that... A crying shame.
:huh: It sounds like almost everything he said was wrong. Sheesh. The others gave you great advice so I won't add more. :)

I wish your daughter the best. I hope she continues to improve on a gluten-free diet.
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#7 Gemini

 
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Posted 12 October 2012 - 10:20 AM

All of the advice given here is spot on and I am a Celiac with Hashi's also. You may want to have your daughter gene tested because that might convince her she needs to be gluten free, although give her enough reactions and poor health and she may come around quicker than you think.

What I would like is the name of her ex-doc....I would like to smack him upside the head, big time! I had no idea that I was following a strict gluten-free diet because of all that special attention I receive! :huh:
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