Please Advise

[Momma Lisa]

I first became aware of celiacs when my brother who has multiple food allergies went gluten free and got excellant results. He had suffered for years with unexplained, often debilitating, back pain and after becoming gluten free has no back pain unless he goes off his gluten free diet.

I began doing research and realized that my mother in law had many symptoms of celiacs ie. irritable bowel, fatty liver, osteoporosis, unexplained rash, depression, small stature, small bones. Her very short statured brother died of colon cancer a few years ago.

My concern is for my children. My 14 y/o has excessive burping, abdominal swelling, ADD/ADHD, asthma, chronic sinus infection, joint and bone pain,difficulty sleeping, late onset of puberty, chronic migraines and is very thin boned.The dentist recently was concerned because her gums were in poor condition( could be a sign of poor nutrition?). My 11 y/o has migraines, reflux,abdominal pain and diarrhea also excessive burping. My 9 y/o feels bad often , had 8 cavities last dentist visit, has allergies,symptoms of ADD and chronic constipation, low energy levels and often seems depressed , severe leg pains wakes up in the night crying with them also excessive burping.

I began using sublingual B-complex and when I give it to my children they are not as irritable. My 14 y/o says she can tell it makes her feel better.

I am overwhelmed with chronically sick children. I too am sick often, depressed, have mulitple allergies, alternating constipation/diarrhea, don't sleep well. My pediatrician was supportive of having my 14 y/o evaluated for celiacs. Her blood tests were negative. He now wants to check her for lactose intolerance. I would love to try going gluten free but my 14 y/o is very resistant. My 11 y/o is a very picky eater. They go to the neighbors and eat junk food if I don't buy it. My husband would never go gluten free and with gluten foods in my home it would be impossible to keep my children from eating them. My husband says he will be tested for celiacs but with the average time it takes to be diagnosed (10 yrs.) i just feel like I am climbing Mt. Everest with out being equipped. He does not want to order the DNA test except through a doctor.

I tried gluten free for a week myself and my diarrhea disapeared.

The stress of chronically ill children has put a strain on my marriage. My husband is verbally supportive but is skeptical and will not insist his mother be tested. He does not want to get genetic testing because of the cost.

I just feel that if my MIL would be tested it would save so much time and money and stress.

Any advice ?

[eKatherine]

It sounds like your husband doesn't have any symptoms, so the chances are he doesn't have celiac, and the tests would come up negative anyway, except maybe for the Enterolab gene test.

Most tests have high rates of false negatives.

You need to get your husband to buy into a gluten-free test diet for the kids - even for just a week or two. There's no other way to do it. It's not up to the kids. If they go over to the neighbors when you don't feed them the junk food they demand, you need to talk to the neighbors about it. You're not helpless here.

[Momma Lisa]

It sounds like your husband doesn't have any symptoms, so the chances are he doesn't have celiac, and the tests would come up negative anyway, except maybe for the Enterolab gene test.

Most tests have high rates of false negatives.

You need to get your husband to buy into a gluten-free test diet for the kids - even for just a week or two. There's no other way to do it. It's not up to the kids. If they go over to the neighbors when you don't feed them the junk food they demand, you need to talk to the neighbors about it. You're not helpless here.

Actually my husband has indigestion and is prone to diarrhea/constipation but it isn't masculine to talk about these. He has characteristics of ADD.

I don't know if this is important but his Dad reacts severely to beer and his brother has multiple allergies.

The gene test would be great if I can get a doctor to order one.

Thanks for the reply. It is wonderful to not feel alone.

[eKatherine]

You don't have to get a doctor to order the gene test. Enterolab does them by mail.

[CarlaB]

You can carry the gene and not have an active disease. So, if you're wanting to find out if your kids have it, then they are the ones who need to be tested. I have two genes for it, so all my kids carry the gene, but only one has an active disease. There is still so much more to learn about gluten-intolerance, that I was perfectly comfortable going to Enterolab rather than conventional testing, which I did, too, and conventional testing ended up being expensive and inconclusive. The biopsy is an old technology, but the medical profession is slow to change.

[ravenwoodglass]

Actually my husband has indigestion and is prone to diarrhea/constipation but it isn't masculine to talk about these. He has characteristics of ADD.

I don't know if this is important but his Dad reacts severely to beer and his brother has multiple allergies.

The gene test would be great if I can get a doctor to order one.

Thanks for the reply. It is wonderful to not feel alone.

Your hubby sounds like mine, it took 3 years and the obvious improvement in my childrens and my health to get him to get tested. He is now enjoying not looking 7 months pregnant with enough gas to blow up the Hindenburg and I am enjoying being able to converse with him without having to direct his attention back to the subject at hand multiple times.

You should of course test the children but make sure you get your own hands on the results. If it is a low positive some doctors will tell you it is negative. It is also possible to test negative and still be celiac or gluten sensitive. I am living proof of that.

The best advice I can give is to get tough about your own need to heal. Sit your family down and explain to them that if they want you healthy and happy they are just going to need to let the home be gluten free. It is summer so by making the house gluten-free your kids may be able to see a difference in the way they feel. I would talk to neighbors and if the kids were going somewhere make sure they have lots of gluten-free stuff available. Once my family saw the changes in my health and more important to them, my mood it helped them be more receptive to the diet themselves. If your teens have issues with short stature or acne sometimes letting them know that the gluten-free diet may eliminate those problems helps. It can also help with ADD and learning disabilities with some kids. It definately made a difference for my DS. I hope you can convince your DH and your kids of the importance of giving this a try. I know how stressful things can be with a sick Mom and sick kids, I just wish I had known about celiac when mine were younger.

[Guest Robbin]

I am sorry you are having such difficulties. I have a similar situation and the only way I can keep my youngest son (13) from being so sick is to make sure that every meal he has at home is healthy. I only make gluten free meals that are simple like meats veggies and potatoes or rice. Gluten free pasta is really good and they can't tell the difference. There are many foods that you could replace that are "junk" food type of foods the kids won't even know they are eating gluten-free, then you can gauge the results by their health. Corn chips, tortilla chips, potato chips, peanuts (if they can eat them) popcorn, etc. The gluten free brownies are great and my son liked them better than regular. Just "slip" it in gradually.

Of course, if you are planning on getting bloodwork done, don't have anyone gluten free until after you are tested. The tests will be inaccurate. I recommend Enterolab highly. You might want to get yourself tested with the whole package, then since the children are symptomatic, get the gene test done for them. If they see your results and see you eating gluten-free and doing well, then maybe it will convince them. It seems to be working with my youngest son. He sees me improve and is taking it a little more seriously now. (Still have a few "fusses" with it, but not as often since he does feel better off gluten.) Hope you get some answers soon and you all start feeling better. My thoughts are with you.

[TCA]

There is a lot "junk food" that is gluten free. Doesn't mean it's good for you, but it's gluten-free. My son is soooo picky and i have a list of foods he will eat. If you want it, just PM me your address.

There are so many great alternatives out there to the gluten stuff. My kids are young, so I can control their diets. I don't look forward to those teenage years!!!

[marciab]

I was also thinking that you could get creative and feed them gluten free foods without telling them. Pretend you are in Japan, speaking Japanese and eating Japanese food one day and then China the next, etc.

Teach them a little about China, Japan, Mexico, etc. so the kids will think they are having fun. That way they won't concentrate too much on the food they are eating. Your husband will just think you are doing some educational "mom" thing.

I wouldn't do it long enough to mess up any tests that you want to have run, but 3 days to a week sounds reasonable.

Many people feel a difference quickly. And if this works, you can tell them it was all gluten free.

My daughter is 18 and is onto everything I try to pull over her now.

Good luck ... marcia