JennyC

I called Triaminic about a month ago. This is their gluten free list according to a phone representative:

Cough & Fever (Bubble gum)

Flu, Cough & Fever

Chest & Nasal Congestion

Cold & Allergy

Daytime Cold & Cough

Nighttime Cols & Cough

Thin Strips--Cold & Cough, Runny Nose... (He was talking so fast that I couldn't write the all the thin strips down so there are likely more that are gluten free. )

My son has had the nasal H1N1 and the seasonal flu vaccine and was completely fine.

Please make sure your children have a proper diagnosis as they have no choice in the matter. I consider it abuse to deprive a child of gluten if they don't absoutely need to be gluten-free. By that, I mean biopsy diagnosed celiac. True villi damage!

I feel absolutely no obligation to attempt to validate my son's diagnosis to you, or really even to educate you regarding celiac disease, but you may want to look up latent celiac disease. Ignorance is not always bliss.

Safeway/Kroger brand condensed chicken & rice soup

Rice Chex to munch on

jello

yoplait yogurt

popsicles

plain Lays Stax

Wow. He sounds very "well off" to be able to afford such events. I bet he got that way by selling tests for unvalidated assays. That's just sad.

First, my daughter is 5 years old.

Her blood work came back as:

Quantitative IgA : 77 MG/DL normal: 33-235

She is not IgA deficient. Her IgA would have to be below 33 to be considered IgA deficient.

IgG Gliadin Antibody: 22 H

Reference Range- >17 =Positive

This is her only elevated result because it is greater than the upper limit of the reference range, since it is greater than 17. There is definitely some wheat/gluten-related pathology going on.

Second, my son is 17 months:

QUANTITATIVE IgA: 33

Reference Range= 24-121

He is not IgA-deficient because his IgA is greater than 24.

IgG Gliadin Antibody: 10

Reference Range= <11 negative

All of your son's tests are negative, but I would have him retested periodically because he is very close to having a positive result and he is very young for such an antibody response.

Both of your children have genes that make it possible for them to develop celiac in the future.

If you post a link I can try to help. Allergies are mediated by antibodies that are released from B-cells and the reaction usually involves mast cells and eosinophils, not T-cells. I have never come across the term T-cell allergy and I've had quite a bit of exposure to this subject area.

Do you know what your RBC indices (MCV, MCH, MCHC) and hemoglobin and hematocrit are? What about your RBC morphology? Do you have ovalocytes or elliptocytes? Enlarged RBCs can have many causes. For example, it could be related to pernicious anemia, megaloblastic anemia or your liver could be depositing lipids onto your RBCs. Make sure they do plenty of testing, but it could be megaloblastic anemia of unknown cause. If they cannot find a cause I would continue to get regular CBCs.

I'm HLA-DQ 08 (0302) and 02 and I do not even have celiac disease, my son does. (But it's quite obvious where he got the gene! ) I don't have any autoimmune issues at this time, but I do experience intense inflammation very easily. It's not a death sentence. Just be sure to listen to your body.

I'm so sorry. You should go to the principle. She obviously is not taking the health of your son, the law, or her career seriously. Keep us updated!

Wellshire Kids Dinosaur shaped chicken nuggets and Wellshire corn dogs were glutening my son. He had sporadic D and I could never figure out why, and his tTG entered the upper limit of the normal reference range. It was not until there was a Chicago Tribune article about this company posted here, that I figured out that it was the chicken nuggets and corn dogs that were making him sick. Their products are labeled gluten free, yet they were being manufactured on equipment shared with wheat. They also told me that since they are meat products, that they chose to follow the USDA "safe" levels, which is <200 ppm. Needless to say that I will NEVER buy another one of their products again! Now that I have removed Wellshire products from his diet, his tTG went back down to very low levels.

Someone mentioned something about BurgerVille having dedicated fryers. I wanted to add that my local BV fries walla walla onion rings and other seasonal foods in the french fry frier, so I do not to take my son there. It might be a good idea to call ahead to BV before eating there.

...and I won't even get started on the McDonalds french fry debate.

You many still have celiac even though your biopsy was normal, it's called latent celiac disease. This is my biggest pet peeve. Gastroenertologists can be so set in their ways!

"Latent celiac disease is defined by a positive serology but no villous atrophy on biopsy. These individuals are asymptomatic, but later may develop symptoms and/or histologic changes."

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Back to the subject at hand. I buy Bob's Red Mill gluten-free rolled oats in the 25 pound bag. They are very affordable that way.

It's not uncommon to see a low positive on the blood dipstick during a urinalysis. The dipstick picks up red blood cells (RBCs), hemoglobin from lysed RBCs, and myoglobin from muscle break down. My point is that many things can cause a positive blood on the dipstick, and it really may not be a big deal, especially if her other urinalysis tests are normal. When I do UA in the laboratory, probably at least 75% have some amount of red blood cells (RBCs) present. Granted, many of these people are sick, but many just have something as simple as an UTI. Do you know her other results?

Lipid storage diseases are not associated with celiac disease, and if you had a true lipid storage disease it would have been apparent a long time ago. Even if it were asymptomatic for some outstanding reason, if would have been picked up by a CBC. If you feel like there is something going on in your body, then please find a doctor who will run some tests for you. I would make sure they include a CBC and a liver function panel.

The blood work can be done at the pediatrician office. In fact, that's where my son's initial testing was done. If they will not test your children, I would go some where else. Also make sure that they run the full celiac panel on your children. You should also keep in mind that it takes time for antibodies to develop in children, so false negatives are not uncommon in children. My son was tested for celiac at age one and tested negative, but at age three and a half tested positive. If your children have symptoms but test negative, you can always retest them later or try them on the gluten free diet.

Celiac Panel:

tTG-IgA or tissue transglutaminase-IgA

AGA-IgG or Antigliadin IgG

AGA-IgA or Antigliadin IGA

Total IGA

Dr. Terry at Doernbecher Children's hospital at OHSU is great. She is also recommended by GIG. Here is her contact information:

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Thank you so much for your reply. I will call the chef Monday. You are right about having a back up plan, it's a great idea.

We are splurging on a trip to the Great Wolf Lodge next week. I spoke to the chef earlier this year and he seemed familiar with food allergies, but I definitely do not not my son to get sick on our vacation! They have a breakfast bar with yogurt and omelets that are gluten free, but I am concerned about cross contamination. They do have a microwave and a small refrigerator in the room, so we could heat some food in our room. I guess I'm really hoping that people will share their Great Wolf experiences, regardless of the location.

Thanks!

My tTG was run at Quest Diagnostics and it only took a couple of days.

My sample was collected at a small doctor office. Maybe my sample sat in a refrigerator for a week or more. It may also depend when your sample arrives...they may only do certain tests on certain days. Maybe I was just unlucky.

It totally depends on the lab they send it to. If they send it to ARUP it's pretty fast (about one week). Other labs vary. My tTG was ran at Quest Diagnostics and it took nearly one month to get my results.

We are another example of a baby reacting to gluten in breast milk. My son was born two weeks early and weighed 7 lbs, 10 oz. He continued to gain weight normally until he was after 6 months old, but he went through a ton of breast milk! As an infant he spit up (practically vomited) after every time he ate. He also had three horrible FOUL smelling stools each day. The doctors could never understand how a small breastfed baby could have foul smelling stools (that could clear a large room of people), but looking back it was obviously due to malabsorption! Around 9 months I started him on solids and gluten quickly followed. When he was nine months old I switched him to formula and his spitting up disappeared but his malabsorption stools continued, but by that time he was eating solid gluten foods. It took many doctors, many tests, many diets to get to where we are today, and we are not ever going back!

Note that your tests have a number, they are not 0, maybe that means something.

Those tests are calibrated so they do not turn positive until there is a lot of gut damage. Usually it is hard or impossible to detect early celiac. Scientists have tested relatives of celiacs over a period of years, and first the antigliadin IgG tests turned positive, then the others. (that is shy doctors regard those tests for unreliable, because they can tur out positive even though the biopsy is still negative)

Only numbers above the reference range are indicative of celiac disease. The values seen within the reference ranges can frequently be seen in the healthy population, and it also gives a little "wiggle room" for slight error that may be inherent in the test or differences between technologists in their reporting.

ANA has nothing to do with celiac disease, except perhaps that autoimmune diseases are often present together. ANA stands for anti-nuclear antibodies, meaning that you're making antibodies against nuclear material. There are different types of nuclear antibodies dependent upon the exact material you are making an antibody against, or the manifesting autoimmune condition.

ANA speckled pattern may be suggestive of one of the following autoimmune states:

systemic lupus erythematosus

Mixed Connective Tissue Disease

Sjogren Syndrome

This website may be helpful:

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RA is associated with the presence of rheumatoid factor, an antibody against antibodies. This many interfere with the results of many immunoassays, including ANA. They need to test you for rheumatoid factor.

This used to happen to me all the time until celiacmommy helped me with this problem. Reduce the butter down to about 1/3 of the amount called for. You should not have a problem if you do that. If you don't take out enough butter and this still happens, you can try adding more flour. Good luck!

You have already gotten excellent advice. I thought that I would tell the reason my son's tTG became elevated. Wellshire's gluten free brand products, such as chicken nuggets and corndogs, have been shown to contain high levels of gluten. For a year he was eating them frequently and his tTG jumped from 4 to 17. After he quit eating their products his tTG went down to 3.