My 18 year old son evidently has a sensitivity to wheat. He has been off of it for a week and a half and shows so much improvement it's amazing. He has no weight problem and is not low carbing but I felt sure I could come here for answers that I can't find elsewhere on the web. (I do low-carb, myself.) My reason for posting is to find out what we should expect in the way of continued improvement over the next week or two. The websites I read to decide which food to target first stated that there should be improvement within a week or two. I think they are striving to be cautious so as not to disappoint those with slow results. His have been astounding.
His symptoms included a flaky rash on his forehead, in his hairline, in his brows and across the bridge of his nose onto his cheeks. That skin on his cheeks was not flaky but it was red and rough and thickened. He also had chronic sinus irritation and sneezed a lot. He has had pain in his back but we're not so sure that was due to the wheat, even in hindsight. Finally, he has had loose stools and IBS-type complaints as well. We went to a highly respected dermatologist who told us it was a fungus and prescribed topical meds. He took them with limited success. I do believe a fungus is to blame but I think his susceptibility to it is due to the wheat.
Within the first 18 hours of skipping the wheat, his sinuses almost completely cleared up. within two days, his skin was about thirty percent better and has steadily improved. It looks almost normal at this point. He says he had watery blisters on his scalp that are also gone.
So, again, how long should we expect the improvement to continue without further measures? It seems to me that he is almost at a standstill but I feel like that is just the nature of this kind of problem. If the fungus is still there, we have some things from the health food store to address that but if his skin will continue to improve strictly due to the lack of wheat, I would like to know what to expect in that regard.
Does anyone have any experience with wheat sensitivity, specifically?

Sounds like he might have gluten intolerance, which isn't just wheat unfortunately. He could have celiac disease, but if you want that diagnosis don't go gluten free until all the testing is done. There's also a gluten related skin disorder with a looong ass name, I can't recall.

I continued to have small improvements for a year or two after going gluten free. I had a nasty form of arthritis that went into remission, some neurological effects like brain fog, things like canker sores. A ton of things improved, some quickly, some took quite awhile, some were totally unexpected, had no idea they were related to gluten.

You might find these sites of use: http://theglutenfile.com/
http://www.glutenfreeandbeyond.org/

Mom, you might want to try this too. He probably got the genes from you or your husband.

Thanks. Yes, I too have skin issues and weak joints. I have noticed improvement when I low carb, and I always thought it was sugar in general. Now I know it was likely the wheat but he is a lot more reactive than I am. Also, I looked at the sites you linked and nothing is mentioned about corn. I have heard of corn gluten but he has been eating corn and is still improving.

NancyLC is correct, it does sound like an intolerance. I have celiac/gluten intolerance, got my numbers from Enterolab last year because I never ate enough gluten long enough to test positive on the blood tests

My 18 year old son evidently has a sensitivity to wheat. He has been off of it for a week and a half and shows so much improvement it's amazing

because blood tests are notoriously inaccurate (about a 30% false negative reading) the diet is the true and definitive test for most
please note that if you want a true diagnoses your son will have to continue to eat gluten for at few weeks until he can have the celiac panel blood tests done. If he stops eating gluten then there is a very good chance the blood test won't show positive. (the test only shows positive when there is enough leakage from the gut into the blood)

He has no weight problem Only about 40% of celiac/gluten intolerant present with a weight problem

My reason for posting is to find out what we should expect in the way of continued improvement over the next week or two.

it's very likely that he will experience a week or two of feeling low and yucky, it's believed to be the body finally detoxing after so many years of exposure. One thing to be aware of is if he does get contaminated at this point his reactions will be worse than before because the immune system does not like the re-exposure.


His symptoms included a flaky rash on his forehead, in his hairline, in his brows and across the bridge of his nose onto his cheeks...... He says he had watery blisters on his scalp that are also gone.

Sounds like Dermatitis herpetiformis (DH) to me, this is a version of celiac that shows in the skin. to get this properly diagnosed he has to be eating gluten and then the Dermatologist has to biopsy just outside of the blister NOT the blister itself.
If he does have DH check his shampoo and other topicals for gluten/wheat. Officially topical applications aren't supposed to affect celiacs but the DH community believes otherwise (generally)

He has had pain in his back but we're not so sure that was due to the wheat, even in hindsight.
Is it the upper right quadrant, just below the shoulder blade? This is a common complaint, I get it and it is dependable sign of contamination. other common signs are canker sores in the mouth and bloating.


Finally, he has had loose stools and IBS-type complaints as well.
classic sign and it's amazing how fast it happens!


So, again, how long should we expect the improvement to continue without further measures? It seems to me that he is almost at a standstill but I feel like that is just the nature of this kind of problem.
If this is a true intolerance then it can take months to fully clear up, it will depend on his level of villi destruction (if he's celiac) or how sensitive he is if he's non-celiac gluten intolerant (ie no observable villi damage)

The sites that NancyLC suggested are good, very friendly especially to the self diagnosed and gluten intolerant. another good site is celiac.com, filled with both diagnosed and non diagnosed it has TONS of good information and is where I learned the most at the beginning, especially about DH and how to treat it plus the lists of safe and not safe foods is very handy. Glutenfree and beyond is very good if you have the type of gluten intolerance that affects your brain more than your gut (this is what I have)

Thanks for the details. You answered a lot of my questions very well. I do wonder though, why it is better to have a blood test or biopsy when nothing will take away the sensitivity and his face breaks out and his bowels and sinuses act up if he eats gluten and it all goes away if he doesn't.
Oddly, his rash or facial symptoms don't look at all like the ones in the pictures on the celiac and gluten sensitivity pages. There are no blisters. It looks like large flakes of donut sugar. Sometimes they're deep enough that the skin is broken but there's never any fluid.
Oh, at any rate, the pain in his back in not localized like you mention. It's just sore sometimes and really doesn't seem connected to the rest.
At any rate, the improvement is undeniable and he feels better, too. So far, there isn't any lethargy or feeling bad in any way. It's all just better.
Thanks again.

the "gold star" (blood & biopsy) diagnosis part helps in 2 ways:
1) there will be times when you get frustrated about there being NOTHING you can eat (this happens mostly in restaurants and visiting) and you'll be tempted to ditch the diet. Remember, this is a life long adherence, not something you can go on an off cause every time you are off you do your body further damage. Some people need the diagnosis to stick to the WOL.

2) having other people believe you. for example, if you son goes to a college and needs a gluten free meal plan you will want that diagnosis. For me it was my spouse, he had trouble understanding that a basic food could cause such damage. Even to this day he is frustrated by how careful I have to be although he's seen the results first hand

having said all that you really don't need a diagnosis as the "cure" is still the same either way - no gluten

If you do want medical input without your son doing the gluten challenge you could look into Enterolab. Dr Fine does stool testing as the TTG antibodies can be in the stool far earlier than the blood. his work is controversial but well supported by many forward thinking doctors.

Thanks. I think any medical testing will have to wait until after we manage to get him added to our insurance. He is not eligible until after his surgery for a cyst is completely healed and there are no more complications. I don't want any formal diagnoses on his record.

Hi Ann,

(You said, "Call me Ann" so I hope this is OK??? )

Anyway, on the wheat thing: you might find this link instructive:

http://heartscanblog.blogspot.com/search/label/Wheat

These are all the blog posts made by Dr Davis of "Heart Scan" fame on the subject. I think there are 40 in all, so you might want to bookmark and work your way through it gradually.

At any rate, I thought you might find it interesting as he has some posts about people who have written to him about their experiences after coming off wheat.

The other thing I wanted to ask is whether you have heard about using coconut oil as an anti-fungal lotion for your son's skin and scalp? It is an excellent anti-fungal, and well worth a try.

I use it after showering and always put some between my toes, especially in winter when my toes are often encased in heavy shoes, and it keeps Athlete's Foot at bay all winter long! Obviously, there are different kinds of fungi around, but coconut oil is very gentle and it might also soothe the skin anyway.

Another thing I have used for cracked and broken skin which worked a treat for my youngest daughter who gets dry skin was a lotion made up at the pharmacy which was almond oil with zinc.

I hope that your son continues to experience further improvements: it sure does sound like he could be have celiac disease. Keep him well away from any wheat-based products and do some research into what other foods contain gluten. For some people, it appears that they are just sensitive to gliadin, the peptide (I think that's what it is) in wheat, whereas others are sensitive to all kinds of gluten-containing foods.

Good luck,

amanda

Corn gluten isn't the same thing as the gluten that gives people problems. It's the prolamine called gliadin that's the issue and it is found in wheat, barley, rye and oats is heavily contaminated with it.

Amanda, you are one of the few who have interpreted the screen name right. Anyway, we were advised to mix tea tree oil with coconut oil for a topical salve and it seemed to irritate it just a bit. Maybe we should try the coconut oil alone.

Hi there!

The only thing I might add to this really good discussion is that if he has gluten intolerance, it's worth finding out the cause (genetic, candida, other issues etc). If it is true celiac, it is worth getting a formal diagnosis because my grandfather suffered for 3 years with true celiac disease and didn't want to see a doctor about it.

He just kept thinking it would go away, was a side-effect of some medicine or other etc. He suffered very badly and while gluten intolerance may clear up to some extent if the underlying cause clears up (e.g. candida, parasites etc), true celiac is much more serious and if a blood test comes back borderline, a biopsy may be needed.

Either way, you're doing all the right things by keeping him off it and allowing his gut time to heal.

Nice to meet you!