Could My Daughter Be Gluten Intolerant?

[sandooch]

My 20-year-old daughter, Jessica, has always has a weak stomach. She is lactose intolerant, although taking Lactagen 5 years ago has made it possilbe for her eat small amounts of dairy with little to no problems (it is no longer available). She cannot tolerate long car rides due of motion sickness and Dramamine does nothing for her.

Recently she has been complaining of nausea and a low-grade fever, even after ingesting no dairy, and usually in the evening. She says she feels like she may need to throw up but never does. I've stayed up with her many a night to help the best I can to comfort her and can hear her stomach churning. She was also starting to get constipated and has been feeling so depressed/anxious lately that she dropped out of college. We thought for sure that after she dropped out she wouldn't be stressed and be back to normal, but the nausea, low-grade fever and mild depression/anxious (for which she cannot pinpoint why) were continuing.

She had been to see doctors on and off for a recurring painful staph infection under her left arm, so I thought that was what was making her experience these symptoms. But it has been in remission for over a month now and she is still not feeling well.

Before taking her to another doctor for more tests, I decided to do some research on her symptoms and saw that they could be related to a gluten intolerance. So I started taking foods that contained gluten out of her diet. The nausea and low-grade fever went away and for a few days she was back to her normal happy self (thank God). But for the past couple of days she says she has been experiencing dizziness while sitting and a headache. Could this be because of the gluten withdrawl?

She is just so sick and tired of going back and forth from doctor and doctor recently that she wanted to try and see if eliminating gluten would make a difference. So far it has except for the dizziness and headache.

So could that be from eliminating the gluten in her diet? If so, how long should that dizziness last and is there anything she can do to help stop it?

Thank you for any advice.

[T.H.]

I'd say it's very possible she has Celiac Disease. I'd say it's more likely than plain old gluten intolerance, mostly due to the dizziness, which sounds like it could be the neurological problems that some Celiacs can have.

- lactose intolerance is pretty common for celiacs who are eating gluten, as the body attacks the part of the intestines that produces lactase.

- If there are vertigo/neurological issues, motion sickness is definitely a problem. Both my celiac daughter and myself have MUCH worse motion sickness when we accidentally get gluten, and were both sufferers of it before we were diagnosed.

- both my daughter and I get low grade fevers after getting glutened. I went about a year and a half with on and off fevers that were attributed to something else entirely, before I was diagnosed. Gluten free, however, made them disappear. However, at the moment, I don't believe it's an 'official' symptom of Celiac Disease. Still, you'll find others who have this as an issue.

- nausea - oh yeah, that can be a celiac issue.

- constipation can be a big issue, too. That's one of mine. Never get the runs, just constipated.

- Depression and anxiety also a huge symptom. Both my daughter and I had that. It defies logic, can't shake it off, all that.

- Having infections that just don't improve or take forever to heal - also common.

Dizziness and a headache are not, I believe, a symptom of gluten withrdawal ( I could be wrong, though. I didn't have it, so I haven't looked at it too closely). But they can be a symptom of mild food allergies/intolerances that were masked by the gluten symptoms before (I had exactly this - dizziness and headaches within days of going gluten free. I ended up keeping a food journal and tracking symptoms and what I ate to track them down. Had an allergy test later, too).

However, it can also be a result of GETTING gluten. If you are eliminating gluten, but not getting all the cross-contamination, she can be reacting to that. Most of us start getting more sensitive to any gluten once we go gluten free. For some of us, it takes months. But for some of us, even a few days of low to no gluten can make us react worse to the gluten we encounter.

Some potential cross-contamination places that could be zapping her:

- chapstick, lipstick, or makeup that she wears, or that anyone she kisses wears.

- contaminated pots and pans or cutting boards - if it's wood or plastic, that's porous and can hold gluten and release it back into food it contacts. Same with Teflon if it has any scratches in the coating.

- If the household is not gluten free, can be cross-contamination between foods. Touch can do it - treat gluten like raw meat that never cooks the germs away. Anything that touches gluten has to be washed before it touches her plates, her foods, etc...

- toothpaste, mouthwash. Shampoo if it ever washes over her face and gets in her mouth. Nail polish or hand lotion if she chews on her nails or puts her fingers in her mouth.

- pets - pet foods or anything else with gluten that has dust poof into the air, that she breathes in, gets into her mouth and a little will be swallowed.

In the end...if she's ditching the gluten and new things are happening, at least it's a sign that SOMETHING is going on. Diet seems like you've found one of the keys to her problem.

If you are looking for food issues rather than gluten cc, the most common among celiacs seem to be dairy, soy, or nightshades. Sometimes other grains, like corn, as well. Also, a small percentage of celiacs react to oats as though they are wheat, rye or barley (even gluten-free oats), so if she's having gluten-free oats, you might want to drop that for a bit and see if it helps.

And unfortunately, for those of us with oat issues, many gluten-free processed products are NOT always free from oats. :-(

[sandooch]

Shauna, thank you so much for all this information. You've given me a lot to think about and look into. I had no idea it could be in chapstick and toothpaste. I will look into those and the other items you mentioned. Thanks again!

[rosetapper23]

There have been a number of threads on this forum where people have described feeling dizzy and lethargic after going gluten free, and I believe that it might be because so many carbs have been suddenly eliminated. It takes a while for a body to adjust to eating fewer carbs. If a person regularly eats bread, pasta, cookies, etc., and then suddenly stops eating them, that person can end up with low blood sugar for a while. When your daughter feels dizzy, give her a banana to see if that helps.

[sandooch]

There have been a number of threads on this forum where people have described feeling dizzy and lethargic after going gluten free, and I believe that it might be because so many carbs have been suddenly eliminated. It takes a while for a body to adjust to eating fewer carbs. If a person regularly eats bread, pasta, cookies, etc., and then suddenly stops eating them, that person can end up with low blood sugar for a while. When your daughter feels dizzy, give her a banana to see if that helps.

Thank you rosetapper23. I believe you are right about the dizziness being from getting off all those carbs. I am happy to say that it has been over a week now and all the dizziness and headaches are gone, along with the nausea and depression. I am so grateful to have my happy daughter back.

She has said that she wanted to get tested to see if she is indeed gluten intolerant, but from what I've read here, in order to do that she'd have to eat large amounts of gluten foods for a couple months. Is that correct? I told her that and she immediately changed her mind. She is feeling too good now to head back to where she was a month ago.