I'm so frustrated I could just scream.

[jcanolson]

The food allergy panel came back negative - which is great, but her TTG is still elevated so that is probably causing the stomach pain.

WHAT AM I MISSING?

We eat out very little and limit it to restaurants that seem to have a good grasp of gf. She's with me almost 24/7. We've gotten rid of any non-stick cook/bakeware and plastic from pre-gf. I've double-checked medications, foods. She's only 6. It's not like she is hoarding food that I don't know about.

I do know that she ate a large order of fries that were not gf (we had been told they were) about a month and a half ago. Could that have messed up numbers that badly? SHe has used some lip gloss that didn't say gf, but nothing listed seemed suspicious - unless the Vitamin E.

Her sister's numbers were great, and she (being 13) is out of the house and on her own eating much more. She also had the glutenized fries. Of course her sister's TTG just started out at 7. They are calling me back with Nat's current number and the one from dx.

I feel so guilty. She's in pain because I'm missing SOMETHING. I hate this.

Any ideas of places I could be missing?

[aklap]

Hi Carol,

Sorry to hear that. :( It's got to be frustrating...

It will be interesting to see if it's lower than her last test or not. If the trend is on a downward slope - that's got to be a good sign. It may take some time [I've seen figures of 1 to 2 years - I think that was for adults however]. What did the docs office say about the levels?

[jcanolson]

Hi Carol,

Sorry to hear that. :( It's got to be frustrating...

It will be interesting to see if it's lower than her last test or not. What did the docs office say about the levels?

They are supposed to be calling back with that - current and at dx. I never asked the number at dx because at that point I didn't have a clue what it meant. Everyone (drs.) that looked at it just said, "Wow, that's high."

[aklap]

You might check thru these links...

http://www.celiacdisease.net/assets/pdf/CDCFactSheetsFollowUpTests7.pdf
http://www.celiacdisease.net/assets/pdf/CDCFactSheetsAntibodyScreening3.pdf
http://www.clanthompson.com/exp_doctor.php?status=show_qa&coded_question_id=233&coded_category=Tests%20and%20Their%20Results&coded_category_id=4

I'm not sure you can see this without registering...
http://www.doctorgluten.com/cms/index.php/Blood-tests-and-results/141-How-long-does-it-take-for-Ttg-levels-to-reduce.html


A parent asked:
My daughter age 2 1/2 was diagnosed with CD in December. Her Ttg levels were >200 and she was severly anaemic (5.3). Iron medication raised her Hb to 10.5 at diagnosis. A biopsy confirmed flattening of the villi.
Iron medication stopped and she has been on a Gluten free diet for 5 months now. After having her levels checked last month I was shocked to find her Hb level is normal but, her ferratin levels were low, suggesting malabsorption and her Ttg levels are still >200.
I am so careful with her diet and she only eats gluten free food. I am also careful with contamination and take her own food when we go to parties/ eat out etc.

We are now being referred back to a dietician.

Is it possible these levels could take a while to improve, or could they be a symptom of another problem??

Dr. Rodney Ford [a ped. gastro in New Zealand] wrote:
The tTG levels can stay up for several years. So get measured again next year. If still high get another endoscopy.

The new DGP tests can tell you if her gut is healing

[jcanolson]

Thanks Al. Good to know the tTG can stay elevated for awhile. The gastro's office just calls and tells me "her tTg is still too high so she must still be ingesting gluten". There are very few kids with Celiac in her practice, so I know they are not used to dealing with it. Not any better options around here. I've considered travelling to Baltimore, but I can't convince myself it is worth it.

Still waiting for them to call with the exact numbers.

It is making sense that her continued stomach aches are due to Celiac. It seemed like she was doing better Nov./ Dec. then we had those stupid glutenized fries and it started back up.

I am relieved her allergy testing came back negative. We were concerned we had another major dietary change to deal with.

[aklap]

What about dairy? Lactose intolerance [caused by the villi damage] can also cause gastro issues.

This may not account for the tTG scores - although there are other foods that can cause damaged villi.

http://www.celiac.com/articles/50/1/Main-Causes-of-Flattened-Villi/Page1.html

Coeliac Disease
Cows Milk Protein Intolerance
Soy Protein Intolerance
refractory Sprue
Collagenous Sprue
Immunodefiency Synodromes
Mediterranean lymphoma
intestinal ulceration
Gastroenteritis
Intractable Diarrhoea of Infancy
Protein Calorie Malnutrition
Kwashiorkor
Tropical Sprue
Parasitic Disease:
Giardiasis
Strongyloidiasis
Coccidiosis
Intestinal Capillariasis
Hookworm Disease
Eosinophilic Gastroenteritis
Contaminated bowel Syndrome
Drug and Radiation Damage

I'd also have to wonder...if other autoimmune diseases can cause false positives...what is the likelihood that the tTG levels might be elevated because of THAT instead of villi damage.

[jcanolson]

We've considered dairy. Tried Lactaid milk for awhile with no improvement.
Food allergy testing showed nothing there.

I'm still waiting on numbers. I know her original numbers were very high (don't know exact #). I think these numbers are actually much improved but still out of range, so they assume gluten is still in the diet. I'll see if I'm right when and if they call back. I guess I'll call them again tomorrow and request the numbers again. From the reports you sent me earlier it can take more than a few months for levels to get near normal, so I'm interested to see what the difference between then and now actually is.

I didn't sleep well last night. I'm PMSing, and this is NOT what I expected to hear from them. I was prepared for all sorts of food allergy issues, but not for them to tell me she is still ingesting gluten. Then they can't even give me the actual results and never call me back.

Deep cleansing breathe...:cwds:

[Judy&Alli]

Hi Carol I am sorry that the numbers are not what they should be. I have no idea cuz I am so new but what about crazy things like dry wall? I have read that dry wall has gluten in it. Could her school be drywalling something? Church? Just throwing it out there because I know how vigilant you are. Keep on trudging my friend you will figure it out. Hugs!!!

[jcanolson]

HiI have no idea cuz I am so new but what about crazy things like dry wall? I have read that dry wall has gluten in it. Could her school be drywalling something? Church? Just throwing it out there because I know how vigilant you are. Keep on trudging my friend you will figure it out. Hugs!!!

Hey Judi,
Thanks for the drywall reminder. I can't think of any renovations that she would have been around, but that is one more thing to check off the list. I've spent most of today re-verifying anything (and I do mean anything) in the house that is not labeled gf. Any other odd gluten things, feel free to share.
The only thing I can come up with is some kid lip gloss that she got in a make-up set for Christmas - that's been tossed, some Bath and Body hand soaps (I know it has to be injested, but she does still suck her thumb at night.), some strawberry milk flavor (It has a malt ingredient, but the company told me it was gf - not derived from barley.), or some bath soap or shampoo (She loves to play in the tub, so who knows what residue she swallows - ugh!). I'm just bewildered and frustrated.
We'll keep trudging on - nothing else to do:rolleyes:!

Thanks!

[Kaylee's Mommy]

I'm sorry you are having a hard time with this.. we were told anything 'malt' is bad.. but not sure if thats true.. I would think her sister would be having issues too if that was the problem.

I wanted to bring up the lactose issue too.. it wouldn't account for the higher numbers, but some kids that were just dx with celiac have lactose issues as well.. My oldest daughter (non-d non -C) has severe lactose issues. We just found this out about a month ago through testing. Lactose intolerance is completely different than a milk allergy.. its the body not being able to digest the lactose in products. My oldest (Jaylin) has had terrribly belly aches.. she was actually tested for celiac several times, all came back negative (obviously:D) but I thought for SURE she had celiac.. after we took dairy out of her diet (milk, butter, yogurt and cheese, we didn't worry about milk IN baked products, cakes, cookies, breads, that type of thing) the belly aches were gone, it did take some time, we went to soy milk for a few weeks.. then brought the lactaid milk in, which she really likes, and we have to use two lactaids in most cases to avoid her belly hurting.

We've been lucky in that Kaylee's numbers were under 3 @ 6months of gluten free.. but her's weren't extremely high, they were just over the positive line.. maybe it is that they were so positive, that damage is taking more time to heal?? are you seeing a pedi GI or is the endo doing this all by themselves? if you arent seeing a pedi GI see if you can get in contact with one.