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Daughter's Ttg Iga Levels Over 300 After 6 Months On Gluten Free Diet


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#1 flowerchild04462

 
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Posted 30 January 2012 - 01:13 PM

Hello,
I have learned alot from this site but have never posted until now. My 13 year old daughter was diagnosed with Celiac in July 2011. Her IgA levels were higher than 300. We immediately started her on a gluten free diet. We were very careful about cross contamination. My sister-in-law also has Celiac and is very sensitive to gluten. She has been very helpful in our transition. After 6 months on a gluten free diet, my daughter's doctor requested another blood test. Shockingly her IgA levels are still over 300! I'm completely baffled by this. He wants to refer us to a nutrionist because he "isn't very familiar with the gluten free diet". ??? Mkay... After lots of research I have discovered that she could also be allergic to corn gluten, or have other auto immune diseases that would result in high IgA levels. After some badgering on the phone, (because I'm not settling with 'she must be ingesting gluten somehow') he has decided he wants to do an endoscopy, but get this... he wants her to go back to eating gluten for 4 weeks first before doing the test. Does anyone have any insight or suggestions or recommendations or similar experience?
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#2 Kjas

 
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Posted 31 January 2012 - 12:41 AM

There could be multiple reasons for this. Options include:

1) She could still be getting glutened. Some of us are more sensitive than others, if she is a super sensitive, you will have to be more careful. Possible sources include but are not limited to: pets (if they eat gluten and llck themselves), shampoo, conditioner, skincare, make up, soap, products being made on shared lines, products being cross contaminated without your knowledge etc. For some of us even small amounts of gluten trigger our immune response. It takes a long time to truly learn how to stay gluten free for most of us. Also, she could be eating gluten at school, either knowingly or unknowingly.

2) She may have other intolerances or allergies. Common ones are dairy, soy, nuts and for some corn.

3) She may have another autoimmune disease. Did she get tested for other autoimmune conditions before or after she was diagnosed with Celiac?

Also, since this has been done with blood testing, they should have tested more than one type during the test. If that's correct, if you can view both test results side by side, if the AGA IgA (or another that is gluten specific rather than autoimmune specific) is high on both tests, that would indicate she is getting glutened still. If it is simply that on both tests that the tTG IGA is high, then it may be more likely to be another autoimmune disease. If they haven't given her a full panel, then I would be asking for that first.

I would be asking going through everything in the house and checking everything she uses, even non food items throughly (i.e. lip gloss, chapstick) and if you don't find anything containing gluten, I'd be asking for a full blood work up, a full celiac panel as well as more testing for autoimmune diseases.

It's not worth putting her back on a gluten for 4 weeks for multiple reasons. First, if they didn't do a scope in the first place, then they have nothing to compare it to, rendering it useless. Second, it needs to be more than 4 weeks to give an accurate idea of whether or not she's being glutened, and your daughter would have to consume a certain level or above of gluten every day for it to be accurate. Finally, I think it's pointless to subject her to the whole thing considering even if you do it, you're not really finding out anything that can't be done with blood tests or other methods which are much less painful.
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#3 mushroom

 
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Posted 31 January 2012 - 01:04 AM

Hello, and welcome to the board.

I am wondering what celiac tests your daughter had initially. Was it just the tTG? A high tTG level can also be caused by other autoimmune dieases. Has she ever had the DGP IgA or IgG tests? The DGP is very specific for celiac and would be more helpful than the other tests in the celiac panel, which are:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

Normally, the endoscopy is done to confirm the celiac diagnosis. I really cannot see the point of putting her back on gluten now to differentiate what is causing the high positive. If it is gluten, she doesn't need any more of it. If it isn't gluten, then we want to know what it is otherwise. Eating more gluten now, in my mind, would just muddy the diagnostic waters. If she has intestinal damage on a gluten free diet then maybe it isn't gluten we should be worrying about. Again, normally, a repeat endoscopy is done to determine dietary compliance. Since she didn't previously have an endo, there is nothing to compare it to to see if the diet has made any difference to the appearance of the small intestine.

So no, I do not understand putting her back on gluten, and it is likely to be a very painful experience for her if she is gluten intolerant. Some people take longer to heal than others. I gather on both tests the highest level their testing went to was over 300, so we don't know what her previous level was or whether it has in fact come down.

There are just too many unanswered questions here. Is there any additional information you can provide??
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#4 dilettantesteph

 
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Posted 31 January 2012 - 04:05 AM

I assume that she was diagnosed by an endoscopy while she was eating gluten. I can't see any reason why you should put her through the illness which would result from eating gluten for another endoscopy. It sounds like your doctor doesn't know what he is doing and you should find another one.

I hope that she has at least been feeling better.

Good luck.
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#5 Bubba's Mom

 
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Posted 31 January 2012 - 05:52 AM

I can understand doing the endoscope to see the state of the intestine since she's been gluten-free. I DON"T understand what could be gained by putting her back on gluten?
I would want a bit of clarification on the reasoning here before putting her back on gluten.
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#6 domesticactivist

 
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Posted 31 January 2012 - 08:46 AM

Bubbas mom sainwhat I was going to. Do not put her back on gluten! An endoscopy now could be good for follow up testing purposes either to compare with a previous result or as a baseline for future testing.
Has she been screened for other autoimmune diseases? Hashimoto's, liver conditions, diabetes type 1... I'm on my phone so can't pull it up more details now but I write a clear report with tests requested and reasons for them. If your dr won't run them look for another dr or order yourself online.

I believe you've been careful and ate informed re: cross contamination, but some people are exquisitely sensitive. I'll pm you some resources on that later. There could be things you never dreamed we're a problem affecting her. If she is in school, btw, that could be the problem right there.

Or... It could just be taking time to heal. Those are very high numbers, it could take time for them to come down significantly.
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Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.

#7 domesticactivist

 
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Posted 31 January 2012 - 08:46 AM

Ps is she feeling better?
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Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.

#8 Skylark

 
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Posted 31 January 2012 - 09:14 AM

Six months has been too soon for TTG to fall some folks on the board. Seems like I remember a thread this past month from someone who still had TTG after six months?

We also had someone who was so gluten-sensitive he couldn't eat brands like Udi's and Glutino. The traces of gluten that inevitably get into grain products kept him from healing.

I don't understand the gluten challenge either. Did she get other celiac tests or only TTG?
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#9 flowerchild04462

 
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Posted 31 January 2012 - 04:50 PM

Thank you all for your replies. I'm glad I'm not the only one who thinks the pediatric GI Doctor doesn't know what he's doing. I hate to question someone who specializes in this sort of thing, when I'm new at it, but I can see that my suspicions aren't too far off base.

I have not checked the dog's food, shampoo, etc. Only her foods. I will be looking into these things asap.

Now when you say someone is gluten sensitive, I assume you mean when someone ingests even a small trace of gluten, they have a severe reaction. My daughter does not fall into this category. We followed doctors order starting a couple of days ago and she has been back to eating gluten and barely any reaction. A little gassy after some pizza.

Before her initial diagnosis, her more severe symptoms were random, headaches, sick to her stomach/vomiting once every month or two.

Her more regular/every-day symptoms were: gassy, bloating, acid reflux, behavioral, difficulty concentrating, etc. Nothing to any extremes, but the headaches and random sick, fatigue vomiting episodes were happening often enough to know that there was something not quite normal, so my celiac sister-in-law told me I should have her tested, and so we went to her pediatrician last May and the ped. ordered the following blood tests:

Tissue Transglutaminase Ab, IgA: H>300
Immunoglobulin A: 101
S Cerevisiae IgA: 4.1
S Cerevisiae IgG: 8.1
Atypical ANCA: <1:20

We were then referred to the ped GI doctor and he saw the IgA over 300, giagnosed her with Celiac, no endoscopy was done. He ordered her to be on a gluten free diet and wanted to run the blood work again after 6 months to see if the numbers decreased. The blood test that her Pediatric GI doctor ordered includes:
white blood cell count
hemoglobin
platelet count
then it lists Leukocytes, the only thing that indicates high is Monocytes at 11.6.
Then it lists her red cell counts
then her platelets
and very last, and appears to be the only thing related to a celiac test is the:
Tissue Transglutaminase Ab, IgA: H>300

Why wouldn't he have ordered the other IgA, IgG etc? So the only numbers that can be compared between the tests are the TTG IgA as far as I can see...

I think we are going to search for a new GI doctor that has more experience with Celiac before I have her go through the endoscopy. It just seems so asinine to have her eating gluten right now. I also would like to have her tested for other auto immune diseases to rule anything out. Her grandmother has Lupus. I don't know if this is something that would cause high IgA levels?

If she is intollerant or allergic to dairy, soy, nuts, corn, etc this would also cause the high antibodies? Is there a way to test for those things, or is it by an elimination diet?

It makes sense that she should be on a gluten free diet and I know that's ultimately what needs to be done for the rest of her life, but still baffled and concerned by the still-high IgA levels. I appreciate everyone's input. You have all given me some things to explore and that's just the reason I came here. Thanks!
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#10 flowerchild04462

 
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Posted 31 January 2012 - 04:58 PM

Also, I forgot to include in my last post the answer to the question: was she feeling any better after being gluten free?
She still gets the headaches somewhat regularly, but those could be unrelated? And in 6 months, no extreme fatigue/headache/vomiting combo sympoms that she used to get every month or two at random. Also those symptoms were often accompanied by her feeling "shaky and weak". I even suspected hypoglycemia. She was tested for low blood sugar at the age of 5 and it was ruled out. Her levels were in the lowest end of the "normal" spectrum. During these episodes she would sleep hard for several hours in the middle of the day and usually wake up feeling better. I attributed all of this to Celiac and am glad to report that she didn't have such an episode for the 6 month period that she was off gluten.
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#11 mushroom

 
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Posted 31 January 2012 - 05:34 PM

I still think I would be included to find another doc who would do the full panel of testing. High tTG TTG can be present in rheumatoid arthritis, type 1 diabetes and inflammatory bowel diseases. If she also had a high DGP that would be pretty specific for celiac

The fact that she improved off gluten is also a strong indicator. Healing from gluten intolerance is slow and can take a lot longer than you think - two to three years sometimes.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#12 Skylark

 
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Posted 31 January 2012 - 05:47 PM

TTG is a general autoimmune antibody that is seen most frequently in celiac but it can also appear in type 1 diabetes, rheumatoid arthritis, inflammatory bowel diseases like Crohn's and ulcerative colitis, and autoimmune hepatitis. Rarely TTG shows up in lupus but it's not diagnostic for it. I had to look up atypical ANCA and it looks like it can be positive in ulcerative colitis and Crohn's. http://www.antibodyp...ns.com/anca.php What are the reference ranges on her ANCA and S. cerevisiae antibody tests? Are they marked positive or negative? Clearly there was enough ANCA that they could discern a staining pattern.

She ideally would have had more specific celiac tests like endomysial IgA or deamidated gliadin peptide IgA for a firmer celiac diagnosis. I think I agree with you that she needs inflammatory bowel disease and other autoimmunity ruled out.

I'm not sure gluten challenge is such a bad idea after all. I'd sure like to see her with a celiac diagnosis rather than other nasty stuff but I agree with your suspicion that she needs a more thorough workup.
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