Could The Blood Test Be Wrong?

[confused mom]

My 11 year-old daughter began having constant stomach aches two months ago (out of the blue). After 2 trips to the pediatrician with blood tests, ultrasound, and x-ray all coming back negative, he sent her to a pediatric gastroenterologist. He tested her for Celiac, for which she tested positive. The biopsy, however, came back negative (the villi have not been damaged) but she had slight inflammation of the lining (report said "duodenal mucosa with mildly increased intraepithelial lymphocytes). Doctor is calling it "latent celiac." Has anyone experienced this?

She has been on a gluten-free diet for 3 1/2 weeks now but we are seeing very little improvement in the stomach aches. She is now complaining of difficulty swallowing, clammy hands, numbness in legs, feeling faint and dizzy. It sounds like panic attacks but could this be related to something else? "Latent celiac" shouldn't cause these symptoms. I'm not convinced that she has celiac - could the blood test have been wrong? Are we missing some other clinical problem because the doctor is only telling me to stay on the gluten-free diet? Meanwhile, my child is not feeling well and I feel like the doctor isn't listening to me. Please help!!

[ravenwoodglass]

No the blood test was not wrong. False negatives on both blood and biopsy are common but not false positives. The symptoms could well be celiac related. Is she eating mostly whole unprocessed foods? That is best at first. Also be sure to take precautions against cross contamination. She needs a new dedicated toaster, colanders and cutting boards need to be changed if they have been used for gluten foods and replace any scratched pans. Many of us become more sensitive to cross contamination after we go gluten free. It also takes some time to heal. She may need some good gluten free supplements including sublingual B12. Also make sure to test everyone in the family, even if they don't seem to have symptoms. I hope she is feeling better soon.

[salexander421]

False positives are extremely rare with a celiac panel. She may still be getting hidden gluten or cross contamination somewhere. What types of things is she eating right now?

[eatmeat4good]

You will want to get her vitamin and mineral levels checked. There could be malabsorption without obvious villi damage. I wouldn't discount the diagnosis...just be grateful the damage isn't showing.

It could be low B's, D, K, iron, or several others.

It can take a while for the body to stabilize.

Also consider other intolerances...dairy, soy, nightshades.

They can cause reactions.

[Dixiebell]

My next step, if you have not done it yet, would be to take dairy out for a while and see if that helps. It could also be that she is having gluten withdrawls or possibly eating something she should not at school.

Give it some more time, it has only been three and a half weeks so far and people get better at different rates.

Definitely have her take some gluten-free multi vitamins too.

[domesticactivist]

I think the test is right. The biopsy shows damage that has already occurred. Also, she could have damage in areas that did not get sampled. The fact that your dr said to go gluten-free is a vote of confidence for him.

It is important that he listen to you, though. Perhaps she has other intolerances and an elimination diet would help.

But first... We found that we made major progress when we went through everything to eliminate cross contamination. (we got the kids involved which was great because they found stuff we missed and they can look out for thselves elsewhere) Here's our checklist

Got rid of:

- scratched plastic or Teflon

- wood utensils

- wood/bamboo drawer organizers

- porous cookware/dishes that can't be run through self clean oven

- potholders

- cutting boards

- rolling pins and cloths used with pie dough, cheesecloth that was in same drawer

- containers most often used for flour or gluten cereals

- mixers used with gluten in the past

- breadmaker

- toaster oven

- toaster

- old food processor bowl

- old sponges

Food gotten rid of:

- all wheat, oat, rye, barley products

- all products processed with wheat (call manufacturer)

- old spices

- cross contaminated grains and beans, etc

- open shortening/butter

- open condiments

- condiments or orher food items containing or processed with wheat

Deep clean steps:

1. High surfaces (top of cabinets and fridge) we took everything down and put in dishwasher, then took a first pass, threw out sponge, ctook another pass, then replaced clean items.

2. Counters same process

3. Floor

4. Cabinets, one at a time (clean outside of all jars/containers that are staying)

5. Drawers, one at a time

6. Refrigerator

7. Microwave

8. Wash toys

9. Clean oven

10. Cast iron through the self clean cycle, then reasoned with new palm oil shortening

This was an expensive and painful process emotionally but so worth it. We gave away a lot of food and sold some stuff on Craig's List, and put a few things in the garage.

It did take a while to get through the withdrawal and in the process we found out things like my son is also allergic to corn, rice flour products are not ok with me, etc. Establishing a good base level of decontamination was really important for us.

[domesticactivist]

Check medicines and supplements, too

[shopgirl]

I agree with everything domesticactivist said. Sometimes it seems like it would be easier to just burn the house down and rebuild it but the big purge and clean is worth it — if only for piece of mind.

[Marlie]

Some of your daughter symptoms resemble my daughter. She has been gluten free for about a month. If she eats anything cross contaminated she will be dizzy, nauseated, get a headache, experience numbness in the hands and has stomach pains. Also, within like 10 minutes of ingesting gluten from cross contamination she starts coughing and sounds as though she is wheezing. Her reactions to Gluten seem to be getting more severe as she remains Gluten Free. She also continues to suffer from cold and warm extremities and joint pain. We are currently waiting for some additional labs related to vitamins to come back and I'm hoping they will be enlightening.