I Could Use Advice Please

[fedora]

I have been off gluten for a little over 2 months, but have had a wheat allergy for 5 years prior. I went off gluten before I read up on all the tests. By then I knew it was a huge part of my problem and would never eat it again for any reason. I sent in my sample that showed gluten intolerance, casein intolerance, and a DQ2 gene.

My son and daughter have some symptoms of gluten intolerance. They are twins who turned 7 just 10 days ago

son: leg pains, mostly at night in the shin or above ankle. But have occured in knee and during the day. He dislikes most dairy and eats it sparingly.

daughter: 3 kinds of mouth sores, and has gotten very moody. she knows she does and is starting to be unhappy about it. I just remeasured her height. She only grew one inch this past year. She has always been small, but this worries me. Usually she grows 3 inches a year. Her heighth percentile went from 18% to 4 %. She has not gained any weight in a very long time. She weighs 40 pounds. Her dad is real lean too, but this almost halt in growth worries me. I don't have her weight recorded nearby, that would take some digging up. But I remember she has been 40 for awhile

Their older bro,10, is symptom free.

They are willing to do a trial run of being gluten free. We have talked about testing also. They grasp the ideas, but we need all to be on board with what will be best for them in the long run. I live in the country, 35 minutes to town that has no redlights, so actually getting to a knowledgable doctor can be a problem. I am wondering if they will stick with the diet in the long run. I am totally gluten free. I will never go back. They already eat some of my food and like it. Their teacher is gluten free right now and totally understands our situation. Our next door neighbor who babysits has celiac. It would be an easy transition, except eating out.

My question is: Has anyone had their kids go straight to gluten free diet without testing?

Have the kids been able to stick with it?

Later did the kids revert and start eating gluten again since they didn't get testing done?

thank you. I hope people will reply!!!!please!!!!

[2kids4me]

I would suggest you play "mama bear" and advocate for some testing. Primary reason is that kids can have celiac in addition to other issues. Any time a child falls from their normal percentile on the growth curve should prompt testing. Celiac, hypothyroidism, other bowel malabsorbtion syndromes can cause growth delay.

My son had leg pains and bedwetting which stopped when he went gluten free after being diagnosed celiac.

Daughter had frequent mouth sores but also migraines, neck pain, back pain, and stomach aches.

Make an appt and go in there with a list of tests you would like - celiac for sure, and perhaps thyroid.

You could just try going gluten free and see if there is a response...hopefully that would do the trick.... but if your daughetr still isnt growing much and the leg pains continue despite gluten free then valuable time is lost.

Trust your instincts - something is not right and it should be investigated. I live in a small town too (no lights at intersections)..nearest city with good pediatrician is an hour away.

[debmom]

We went ahead with a gluten free diet even without confirmation from testing. My daughter almost immediately saw some relief from her many symptoms. She also had restless legs and leg pain (gone now after 11 months on the diet). She also started to grow again and gain weight after a hiatus of at least a year. Her autoimmune disorders (Reynauds and thyroiditis as well as mold allergies) have gotten much better. But the best thing was that the debilitating stomach pain she had for seven months slowly started to go away and hasn't returned in the last nine months. She doesn't need any testing now to prove that she is much better off gluten. The two times she had accidental glutening, she had stomach pain almost immediately. Her success has been so great that my sister and I (both diagnosed with ulcerative colitis as teenagers) also started the diet. For the first time in over 20 years, we both had colonoscopies with no sign of disease. Our gastroenterologist who doesn't know much about celiac (by his own admission) says, "Keep doing what you're doing. It works!" My daughter's doctor told us last week that he believes that even with the testing, 10-15 percent of all celiacs will be undiagnosed. He cited a book he had just read that said that it will be years before our testing is sophisticated enough to pick up all celiac. So long story a bit shorter-- try the diet!! that is your benchmark.

[MrsGlutenFree]

I have been off gluten for a little over 2 months, but have had a wheat allergy for 5 years prior. I went off gluten before I read up on all the tests. By then I knew it was a huge part of my problem and would never eat it again for any reason. I sent in my sample that showed gluten intolerance, casein intolerance, and a DQ2 gene.

My son and daughter have some symptoms of gluten intolerance. They are twins who turned 7 just 10 days ago

son: leg pains, mostly at night in the shin or above ankle. But have occured in knee and during the day. He dislikes most dairy and eats it sparingly.

daughter: 3 kinds of mouth sores, and has gotten very moody. she knows she does and is starting to be unhappy about it. I just remeasured her height. She only grew one inch this past year. She has always been small, but this worries me. Usually she grows 3 inches a year. Her heighth percentile went from 18% to 4 %. She has not gained any weight in a very long time. She weighs 40 pounds. Her dad is real lean too, but this almost halt in growth worries me. I don't have her weight recorded nearby, that would take some digging up. But I remember she has been 40 for awhile

Their older bro,10, is symptom free.

They are willing to do a trial run of being gluten free. We have talked about testing also. They grasp the ideas, but we need all to be on board with what will be best for them in the long run. I live in the country, 35 minutes to town that has no redlights, so actually getting to a knowledgable doctor can be a problem. I am wondering if they will stick with the diet in the long run. I am totally gluten free. I will never go back. They already eat some of my food and like it. Their teacher is gluten free right now and totally understands our situation. Our next door neighbor who babysits has celiac. It would be an easy transition, except eating out.

My question is: Has anyone had their kids go straight to gluten free diet without testing?

Have the kids been able to stick with it?

Later did the kids revert and start eating gluten again since they didn't get testing done?

thank you. I hope people will reply!!!!please!!!!

I really do suggest that you get them tested. At least have them do the blood draw. It's so simple & quick. I think as individuals, the kids have the right to "know" whether or not they do have Celiac disease or not. I would strongly suggest against them doing the diet without testing. Later on they would have to endure months of eating gluten in order to get tested, which isn't good for them, if they DO have it. So, since they're eating gluten now, it's the safest way to go about the testing. Good luck!!!!

[fedora]

Thanks for the responses. I have decided to take her in for the blood work, then go gluten free. I was able to get an appointment tomorrow afternoon. The nurse I talked to suggested starting with blood allergy testing. I told her they are not the same. She said grain allergies could show up. I said they were a different antibody than celiac antibodies. I am okay with allergy testing. IgE antibody allergies occur in her dad, my sister, and maybe me. So she could have those too.

I need to be prepared. Any recommendations on web sites I could print out info from. Any suggestions on going in there and what to say and do. I don't know if they have much experience with celiacs. Luckily my daughter is digestively ill- no D or vomitting.

I would hate it if it was something else and we didn't catch it early.

Thanks again.

[gfpaperdoll]

Fedora, I posted on your other thread about testing. good luck tomorrow.

I am double DQ1, 61 now. But when I was 25 & severely ill as was my baby son, I had both of us tested for food allergies. I was allergic to barley and oats in addition to a lot of other foods & there was a lot of whispering going on - I look back & think that I was probably also allergic to wheat but they did not tell me. Finding out that I was allergic to those two grains, I think saved my life. because barley is in every baked good that is sold & I was severely allergic.

I know that you know it is not the same but one can have an allergy and be intolerant at the same time.