Am I Wrong?

[GimmeMoe]

I have been going crazy trying to figure out what is wrong with my 5 year old daughter. We have had "issues" for years. Can it be Celiac, or am I wrong? My dr won't test because he said we'd KNOW if it was, because she'd have blood in her stool. I'm pretty sure he is wrong.

Here are her issues.

- Weighed less at her 1 year check up then her 6 month (dr could never figure this out)

- Poor weight gain

- Daily headaches and stomach aches

- Has a DAILY temp flucuation from 97.5 - 102.5 (typically 99 in the morning, 97 by afternoon, and 102 after supper)

- Frequent urination (every 15 mins). This has gone away with a gluten-free diet

- Pretty sure she has never had a solid poop

We have been gluten-free for a couple of months now, but only some of her symptoms are gone. Could trace amounts still be causing the headaches, stomachaches and fever? She has had normal CBC, thyroid, and glucose levels.

Thanks for any input!

[Skylark]

Hi and welcome. No, celiac usually doesn't cause bloody stools. Classic celiac is failure to thrive, diarrhea, and stomachaches, all of which your daughter has. You need a better doctor. The unexplained fever is worrisome. CBC, thyroid, and blood glucose is not an adequate workup. I would want to see her tested for other autoimmunity like ANA and rheumatoid factor. Unfortunately now that she is gluten-free she cannot be tested for celiac when you find someone competent.

The only way to know about traces of gluten is to be sure she is 100% gluten-free. Cross-contamination in kitchens commonly causes trouble, particularly if you are still baking with wheat flour. She needs a separate toaster, separate cutting board for her food, and separate jars of condiments like butter, jelly, and peanut butter. It's too easy to get crumbs in them. Things like colanders that are difficult to clean can be a source of enough gluten to bother a celiac. If you have pets, there can be enough gluten on the floor from kibble to give her trouble.

[Takala]

The frequent urination going away is a red flag for there being too little/too much calcium in the bloodstream, so the glands try to re - regulate it, ending up with it is being leached out of the bones due to the gut not working properly, and then the kidneys filter it out, where it ends up as crystals in the bladder, and can cause many, many UTI's. Don't take "tums" calcium carbonate as a calcium supplement because this makes it worse, take a different form of calcium supplement, such as citrate, but make sure anything that is taken, including over the counter and prescription supplements and medications, are gluten free.

There can also be a problem with not absorbing enough B vitamins, so a nice, gluten free, over the counter B complex vitamin also helps.

As for the daily headaches, you may want to try to start avoiding red food dyes. She also may be sensitive to other foodstuffs or chemicals that you have not figured out - yet. You can figure this out by doing an "elimination" diet whereby you drop to just a few foods, make a daily diary to chart reactions, then add new foods in, slowly. You could also have a trace amount of cross contamination going, because this purge of household gluten is like the worst ever game of Treasure Hunt Elimination/Crime Scene Investigation you're ever going to play. Some brands of gluten free foods are trustworthy, as are some brands of regular manufacturers who have a policy of disclosing allergens on their labels - others are not worth a **** ***. I have eaten restaurant meals without problems at careful places, and made myself ill with my own cooking by putting on the wrong ketchup, because some company did not disclose shared equipment lines, or worse. And my husband tries, but he is not the fanatical label reader that I have to be - and manufacturers will change ingredients on you without warning.

Don't forget to look at shampoos, lotions, and hair conditioners with wheat germ and oats sativa (bleah!) as a potential source of cross contamination.

You CAN still get her tested over the counter for the genes for gluten intolerance/sensitivity and celiac, to see if she carries any of them. While this is not a "for sure" diagnosis it will put her into the category of "more likely."

Wow, I got thru 5 paragraphs without calling the doctor a **** !

[Guest flowermom6117]

Much to my surprise we figured out my four year old temperture will rise when she eats one of the foods she is allegic to. Her immune systom is so sensitive even trace amounts will cause her temp to rise 2 degrees. I would suggest getting her tested for food allergies, including wheat. Her possitive wheat allergy is how we finally got the celiac testing.

Good luck I know the fevers can be scary and doctors don't always make the right conections.

[researchmomma]

Wow, I got thru 5 paragraphs without calling the doctor a **** !

you showed amazing restraint. I think you need a new doctor.

You should post in the Doctor thread so you can find one.

[Emily30]

my son had pretty much all the same symptoms the biggest one was weighing less at 1 yr than 6 months and crying constantly. He was "diagnosed" with celiac from a family doc from a blood test and diet response-we didnt do the scope. We saw a big change, but not everything went away. We found that he also couldnt have eggs, red dye, processed meat,corn and most processed foods. (just diet elimination is how we discovered these) We got much better-I have read stuff about leaky gut and I think that is what was going on. When his stomach healed we were able to add those back in(the processed stuff in moderation). Now just gluten free he is thriving.

So check for cross contamination, but also check for other issues that he could be having.

[GimmeMoe]

Thanks everyone! I am working on eliminating all trace amounts of gluten from our home. I figure the best way to see what is going on is by getting her fever and ache free for a couple of weeks (already day 2 of no issues!!), and then give her a good "gluttening". It feels mean - but it is a far better test than I'm getting from my doctor. On that note - she will be seeing a new pediatrician in April - but in the mean time we are just trying to figure stuff out.

Thanks again :-)