Dh Testing A Gluten Free Diet....

[carecare]

Hi,

Glad to have found a forum to post on.

I'm here for some advice. My dh has been having lower GI issues for the last 10 yrs or so. I really think this is what he has. He's finally looking into it himself too...and yesterday he came home from work so depressed at the thought of having to change his whole diet. I'm getting overwhelmed...thinking about this gluten free way of life. I'm scared...and am hoping I don't have to live like this but the more I think about it...the more I believe we need to change the diet in this household and get everyone healthy. My daughter has issues too. I ended up pulling her out of 6th grade to homeschool her because of her diahrea issues. I didn't want to send her to school sick..and she was missing soooo much school. She actually had the blood test for Celiac after having her appendics taken out. The dr. informed me that her appendix was surrounded by lymphocytic cells (I think that's what he said) and that it was very common with Celiac patients. Her test was negative. But I had my doubts because she barely had eaten any gluten that week...as she for some reason as a young child stopped eating bread and cereal (do you think her body new something we didnt'?) She also has oral allergy syndrome pretty severe so gosh...she has a strict diet. Anyway, she has bouts of intestinal problems still. My other 3 kids never do. Then I read another thing....celiac can cause other problems in kids as well...joint pain, adhd, and anxiety...all of which my other daughter has. That just got me thinking.

Also, my dh's mom had severe intestinal problems in her 20's (my dh is 37). She got test after test and never found anything out. Until she took dairy and whole wheat products out of her diet. She says she can tolerate white bread and flour...just not things with whole wheat or certain other grains. She takes lactose pills when needed and has been doing well. Could she have Celiac? really makes me wonder. So if she has celiac and certain foods with gluten in them don't bother her but only things labeled with whole wheat...is she still damaging her system without the symptoms being present?

Some other questions. Dh says he feels so much better already...as of yesterday he's watching his gluten intake. He said today was the first time he can remember that he didn't feel like falling asleep at work in the afternoon. He feels he has more energy. Is it possible to feel better in such a short time. Dh is a bread man...eats it with all his meals...loves crackers and cookies. So his plan is to go gluten free for a few weeks then ingest gluten products and see what happens. Then he said he'd go to a doctor if it appeared it was definitely the gluten issue. If he tests positive then I'll go and have my girls tested. I'm heading to a healthfood store 30 miles away tomorrow as I saw on the web that they carry a lot of gluten free foods. This just all seems so overwhelming to change the way we all eat. I feel like purging all the food and starting from scratch.

Also, anyone ever use Enterolabs? They test for digestive disorders using a stool sample and claim to be more accurate than a blood test or biopsy. Is it worth the $350 to have the complete work up?

Any advice would be greatly appreciated.

Thanks,

carecare

[Ursa Major]

It sure sounds like your husband and daughter have at least a gluten intolerance, probably celiac disease. And yes, it is entirely possible for your husband to feel so much better after only a day on the gluten-free diet.

And your daughter likely stopped eating gluten foods when little, because they made her feel bad. It is likely that her blood work showed a false negative, due to not eating enough gluten foods to get a positive.

If your husband will try to get officially diagnosed AFTER being gluten-free for a while, he will get false negative results, even if it is celiac disease. Mind you, the Enterolab results will still be accurate up to a year of eliminating gluten. And yes, many here have been tested through Enterolab. There are some here who don't believe Enterolab to be accurate. But I think they are right on.

I had my youngest daughter tested through them, and feel it was worth every penny. Finally she went gluten-free (which, being a typical teenager, she refused to do without proof that she needed to, bloodwork was negative), and I can see the difference. Her moods are better, she has an easier time getting up in the morning, and her bowel problems have stopped.

[Fiddle-Faddle]

My son also seemed to react more with whole wheat than with white bread. Does anybody have a scientific explanation for this? I thought white bread was higher in gluten?

[carecare]

Would he still possibly test negative if he goes say a week with gluten free foods after being gluten free for some time?

Would it be best for him to eat the diet he is used to and then go to the dr? Would a dr. listen to him and allow him to get a blood test for celiac right away? I would hope they would.

Thanks for your reply. I'll look forward to hearing other's opinions on enterolabs. Has it been accurate for many people? So your daughter tested negative for celiac through the blood test but positive through enterolabs testing? Glad to hear she's feeling better and you notice a change in her since going gluten free.

[Ursa Major]

Unfortunately, one week of gluten after being gluten-free for a while will likely result in a false negative. He would have to eat at least four slices of bread a day for three to six months minimum to maybe get accurate results.

So, if he wants to get the 'official' testing done, he should keep eating his regular gluteny diet right up to taking tests. And there should be no good reason why a doctor wouldn't order the blood test, and having it done the same day. Just beware that neither the blood test nor the biopsy is terribly accurate. There are many false negatives with both.

My daughter doesn't have the genes that this country recognizes as the official celiac disease genes (in other countries they recognize more genes than here, and many scientists believe that they still haven't found them all). Her symptoms are primarily neurological (with some digestive symptoms thrown in, which were getting worse). She couldn't retain what she learned in school, forgot everything, was moody, had trouble getting up in the morning and had very low energy.

She's been on the gluten-free diet only four weeks now. And even though she won't admit improvement, I can see it for sure. Her malabsorption score was quite high (816, with under 300 being normal), and I will take her next week to be tested for deficiencies, because I have to prove everything to her so she will listen. I've tried to convince her to take vitamins, but because I haven't proven to her yet that she needs them, she keeps 'forgetting' (sigh, teenagers can be a big pain).

[carecare]

Thanks for you input!! I just emailed him and informed him of your remarks about negative blood tests if you have been on a gluten free diet for sometime. I suggested he eat like he normally did prior to Monday...and he emailed back saying "no thanks...I'd rather feel good." So he's definitely seeing an improvement in how he feels overall with just a few days of being gluten free. The Enterolabs are expensive for us but maybe he'll decide to go that route. I'd like to know...because then I could decide about what to do with my 15 yr old.

Interesting what you say about your teen. My 13 yr old is exactly like what you described "She couldn't retain what she learned in school, forgot everything, was moody, had trouble getting up in the morning and had very low energy. "...... I actually started her on ADD meds because her school work was being so effected. Without the meds she just doesn't retain information. She also has possible Juvenile Rheumatoid Arthritis...and has been dealing with joint pain for a year and a half. Her Anti Nuclear Antigen test was the only positive blood test she got. For now we are just keeping an eye on it....and treating the pain accordingly. However, I really wonder if she would also benefit from a gluten free diet. It wouldn't be too hard to try if I have to change the way my DH eats...I'll just cook gluten free for some time and see. I actually already mentioned it and she was a bit upset wondering what she would eat for lunches at school. She wouldn't be able to order off their menu but would have to take her own lunches...which she doesn't like to do. We'll see.

Carecare

[Ursa Major]

You realize that joint pain and ADD are extremely common symptoms of gluten intolerance, right? those ADD meds are very addictive, and a gluten-free diet may just fix both the joint pain and the ADD.

My five-year-old grandson had joint and muscle pain and was very emotional, until my daughter eliminated gluten. He is fine now, and is also gaining weight (he was spindly before).

I am glad your husband has decided to just stick with the diet. For some people the test results are important, and others (like me) are happy with just feeling better.

[carecare]

Yes, I have read about the connection between joint pain, ADD and celiac. I would loooove for her not have to be on medication. If changing her diet helps her...I'd be spreading the word to everyone!

Question....my dh says he doesn't want the kids to go gluten free unless they are tested. He said he read that going gluten free can make symptoms of disorders dissappear but it doesn't mean they are gone and cured of the disorder. However, wouldn't that be a good think to go gluten free and have symptoms dissappear? I'm trying to come at him with some good thoughts on this. I went grocery shopping today...printed off food lists and purchased all gluten free items! Holy moly...I bought a lot of stuff but I wanted to have supplies on hand for the gluten free segment of the family. I figured I would slowly weed out the gluten foods in the house..and have the whole family go gluten free. My dh doesn't like this idea. He thinks the kids need the gluten. Is there any reason they should have gluten in their diet? If they are eating healthy does it matter? Without gluten...are you missing key nutrients from those foods?

edited to add: I think I misunderstood my dh. We talked some more and he just doesn't want the kids to have to go gluten free if there isn't a diagnosis. So we'll see. We know if they go gluten free and then see a dr. that the test most likely will be negative. However, we have to decide on the Enterolabs testing. It's a lot of money ...especially if 3 family members are tested. But...it may be worth it.

You realize that joint pain and ADD are extremely common symptoms of gluten intolerance, right? those ADD meds are very addictive, and a gluten-free diet may just fix both the joint pain and the ADD.

My five-year-old grandson had joint and muscle pain and was very emotional, until my daughter eliminated gluten. He is fine now, and is also gaining weight (he was spindly before).

I am glad your husband has decided to just stick with the diet. For some people the test results are important, and others (like me) are happy with just feeling better.

[Ursa Major]

There is plenty of evidence that gluten isn't good for anybody. More and more scientists are saying that about 80% of the North American population is gluten intolerant and would benefit from a gluten-free diet. That includes all the people with IBS (NOT a valid diagnosis, as an irritable bowel is a symptom, not a disease in itself), Crohn's (the gluten-free diet is very beneficial for those people), colitis etc. It has been found that mental illness (schizophrenia, depression, bipolar, dementia etc.) is often a direct result of a gluten intolerance, which is cured when gluten is eliminated. The same goes for ataxia, numbness in legs, feet and hands, lots of skin problems, gall bladder disease and a host of other illnesses/problems.

The gluten-free diet is much healthier than the regular diet, if you don't replace all the gluten junk foods with gluten-free junk foods, which have even more sugar and starch in them.

My oldest daughter has made her house gluten-free, meaning that she and her five kids are completely gluten-free, but her husband will eat gluten foods at work still. And they are all better off for it, even the kids who didn't seem to have a problem (one of them, maybe two).

As long as you give the kids a good multivitamin, there is no good reason to keep eating gluten. Especially if gluten is obviously hurting them.

Research has shown that ADD meds actually cause brain damage over the long run. So does gluten in susceptible individuals.

And actually, if gluten is causing your daughter to have ADD, then yes, taking her off gluten WILL cure the ADD. Because it isn't really an illness, but a symptom of the gluten intolerance. Right now she is likely taking meds to fix the symptoms of gluten poisoning. How logical is that? Both the gluten and the medication is hurting her. Why not just change her diet?

Wheat has B vitamins. You can obtain those from other foods, or a supplement. The gluten-free diet is a healthy diet.