4Wyguy

3 minutes ago, Wheatwacked said:

My son was diagnosed when he was weaned. By kindergarden as predicted when he was diagnosed with Celiac, we started him on Ritalin. The results were amazing. The same kid who couldn't focus on putting on socks in the morning, 15 minutes after taking a Ritalin was being helpful. He was on Ritalin everyday through High School. He didn't like the way it made him feel but it did help in school. When he got a job as a profession life guard he stopped the Ritalin. 

I was started on coffee by age 10 for ADD. Stone age back in 1961. I tried Ritalin for a short time in the eighties and it was wonderful, but by then my gluten caused alcoholism was taking over and I found myself using it as a hangover remedy, so I stopped. In 2014 the week I started GFD the alcoholism went away. So what I am saying is give Ritallin a try. My son had no problem with it for 14 years. It did not caused stunted growth. He is 6'3" and 215 lbs and was a competative swimmer all his life.

If the doctor is saying things that don't make sense....

Also, get his vitamin D level up. It affects mood, attitude, immune response, That will also help with his Mine was in the sun everyday before they convinced us that sun is bad. Funny thing is with all the sun protective gear he wears at work, last August he tested low for vitamin D.

If you can all get tested, great. Most important GFD for all, you will see the  change. There is no medical need for gluten. In fact 11% of the population have either Celiac Disease or NCGS. 

By the way contrary to your doctor's statement, I spend less money eating gluten free. Processed gluten free is not healthy gluten free.

Those I think were the two most important: Ritalin and Swim team practice.

She’s tried to prescribe two anti psychotics now with no medical backing.

we definitely have tough days but not enough to administer the choices presented, his vit D was checked as well the week before last when all these test were run, the natural path was real impressed how high his levels are without supplements. He plays baseball and is a very active kid, just lacks behaviour regulation and impulse control. But I’ll keep that in mind if we start seeing concerns at school. 

1 hour ago, trents said:

You should have not just your other children tested but both their parents tested. Absolutely!

A large study done last year by the Mayo Clinic found that 44% of first degree relatives of those with confirmed celiac disease also had active celiac disease themselves. Previous studies had found a much lower incidence among family members, more like 10%. So there is wide disparity in the research but the point is it may be much higher than previously believed. Obviously, your son got the gene or genes from somewhere and if your other children all have the same set of parents they will have those same genes. 

At this point in the research, two primary genes have been identified with celiac disease, HLA-DQ2 and HLA-DQ8. And we know that other genes that influence the expression of the disease. Not everyone who has he genes will get celiac disease. Most won't. It takes both the genetic potential and some triggering biological stress event to turn them on and this is where the knowledge of the phenomenon is very incomplete at this time. 

https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-study-calls-for-screening-of-family-members-of-celiac-disease-patients/#:~:text=The retrospective study%2C to be,had no symptoms at all.

Please realize also that many people with celiac disease are asymptomatic or largely so for years until there is enough damage done to their small bowel villi that their body begins to fall apart from nutrient malabsorption.

If your physician balks at the idea of testing other family members who are asymptomatic then there is the option of purchasing a home celiac disease test kit from companies like imaware or aroun 100 USD: https://www.imaware.health/at-home-blood-test/celiac-disease-monitoring

Here is a primer for celiac disease antibody testing: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/. The tTG-IGA antibody test is the centerpiece of celiac antibody testing but don't let your physician order only that one because it misses some who actually do have celiac disease. I would ask for total serum IGA, ttG-IGA and Deamidated gliadin peptide (DGP IgA and IgG). Young children especially may be missed because when only the tTG-IGA is run because they may have low total serum IGA or because their immune systems are not fully developed and they respond atypically compared to adults.

How old are your other kids?

You are not going to want to here this but unless your whole family eats gluten free in the home, there is a high probability that the 5 year old will get consistent cross contamination and not heal properly. There is also a high probability that the 5 year old will get cross contamination whenever you eat out since you have no control over how the "gluten free" food you ordered is cooked and handled by the kitchen staff. This may help: 

Finally, make sure the 5 year-old is taking a gluten-free multivitamin to compensate for nutrient malabsorption until his intestinal villi rebound.

I apologize for such a long post. I know, we all know here on the forum, how overwhelming a celiac diagnosis can be to a whole family. The social challenges it imposes are probably the hardest part.

I honestly really appreciate it. He was iron deficient at 15 months but the paediatrician told me he would put grow it and stopped testing. Behavioural issues arose and aren’t consistent, 4 peds later and all they want to do is put the pore kid on meds without a diagnoses. I reached out to a natural path. She did the blood work, which shows he is still iron deficient, and his celiac numbers were 175.5. I don’t remember what the IGA reading was now. 
 

we intend on switching over everyone slowly, but going to get through what’s in the house first. Just transitioning him immediately as suggested. They are 7,2.5 and 3 months. So the baby will only know gluten free with due time. for now, I purchased separate things to cook and eat from for him. Just have to see if our family doctor will order the test then. Not sure if I can put out $300 for each of us.  His ped told me yesterday that I am wasting my time and money and that switching to gluten free isn’t going to make a difference except to my grocery bill. 
 

the natural path has him on L glutamine, iron, zinc and vitamin C for now. And I am not intending on eating out for a while until we adjust and learn more about this. I’ve never felt so clueless as a parent, but thankful for lots of options in the grocery store 

we didn’t have his genes tested. It was just from the blood work, and with his fear of needles and doctors now I’m not going to put him through the biopsy unless they feel it absolutely necessary. 
 

thanks again for this info, I look forward to reading it when the kids go to bed  

My son is 5 years old and was just diagnosed with celiac last week. He struggles with behaviours and emotion regulation a lot and through our journey of avoiding medications have now found this out. 
 

should we have our other children tested? And any tips and tricks for a 5 year old?