Newly diagnosed

[4Wyguy]

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? 

[trents]

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.

[4Wyguy]

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  

[Jays911]

1 hour ago, 4Wyguy said:

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  

Your ped is an ass. As advised, have the whole family go gluten free as soon as you can.  You can eat out, but it is a minefield that you have yo learn very cautiously. Blessings. 

[Wheatwacked]

2 hours ago, 4Wyguy said:

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. 

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 cause stunted growth. He is 6'3" and 215 lbs and was a competative swimmer all his life. Yes Ritalin in a not ADD person is an amphetamine, but with ADD it brings the speed of thought to a managable speed. In college we used amphetamine to cram. We all took a Black Beauty to study, every one went off to study. I went to sleep for two hours.

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.

Edited July 20, 2022 by Wheatwacked

[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. 

[Wheatwacked]

I start to spasm and jerk on SSRi tranquilizers, get calm on amphetemines.  Go old school and see how he does on coffee. Coffee puts me to sleep.

Baseball is good. Swimming worked for us because it is year round and in the end gave him a profession.

13 minutes ago, 4Wyguy said:

behaviour regulation and impulse control.

Lithium Orotate; "low lithium intakes from water supplies were associated with increased rates of suicides, homicides and the arrest rates for drug use and other crimes.  a provisional RDA for a 70 kg adult of 1,000 microg/day is suggested."  https://fanaticcook.com/2015/09/11/an-rda-for-lithium-on-the-order-of-1-mgday/

I take 5 mg lithium orotate (Not the 1000 mg dose of another lithium compound used for Bipolar) and it calms my urgency to act out an impulse.

 

[trents]

It is certainly possible to avoid those expensive gluten free foods and stick to main stream foods once you learn to avoid the ones that might contain gluten. Like others have said, foods made from gluten free flours will be largely void of nutrition since gluten-free flours are not required to be enriched/fortified by the FDA as are wheat and other mainstream grain flours. There is a learning curve to this, however and mistakes will be made. But it's part of the learning process.

[Kyndryl]

I know someone here was mentioning coffee but I would disagree. I would have constant stomach pains everytime I drank coffee and took me trying a lot of different brands til I found one that didn't bother me also I had to drink it with coconut milk. The thing we don't know yet if he is lactose intolerant too because that is what happened to me years after even though I was following a strict diet. Also start with going through all your vitamins and supplements and candies a lot of them have hidden sources of gluten in them. Watch out for oats because they gave me the same reaction as gluten and I was frustrated I had to go to the hospital after eating a Kind Bar (gluten free) but it was so painful.

https://gluten.org/2021/03/23/43-foods-where-gluten-may-be-hidden/

1. Soy sauce and teriyaki sauce – Traditionally made with fermented crushed wheat and soy in a salty brine with mold cultures.  

2. Corn flakes and crisp rice cereal – Some popular brands are made with malt from barley.

3. Soup thickened with “roux” – Roux is a mixture of fat, usually butter, and flour.  

4. Salad dressings – May contain malt vinegar, soy sauce, or flour. Could also contain modified food starch that’s used to emulsify, thicken, or as an anti-caking agent. In the U.S., modified food starch is usually made from corn; if made from wheat, this must be specified on the label as “modified wheat starch” or “modified food starch (wheat.)”

5. Marinades and barbeque sauces – May contain malt vinegar, soy sauce, or flour. 

6. Taco seasonings – Certain brands contain wheat.

7. Vinegar – Fermented vinegars made from gluten-containing grains need to be avoided. Malt vinegar is fermented and made from barley. Chinese black vinegar could be made using wheat in addition to rice. Distilled vinegars made from gluten-containing grains are gluten-free after distillation. Read our article:  “Does Fermentation or Distillation Make a Product Gluten-Free?”  

Items that are usually gluten-free, but could potentially contain gluten:

8. Cooking spray – Certain brands of cooking spray contain wheat flour, but most do not.

9. Specialty ketchup – Some brands may use additional ingredients like malt vinegar or miso, which may not be gluten-free. 

10. Mustard – Wheat flour could be added as a thickener or bulking agent in some specialty mustards like English mustard. 

11. Cheese – Some cheeses have added flavors or other ingredients that could contain gluten. For example, some hard cheeses could be soaked in beer. Blue cheese may use penicillium derived from wheat; although gluten levels in the cheese are probably low, GIG recommends choosing gluten-free certified or labeled blue cheeses.

12. Broth/stock – Some powdered or packaged broths can contain gluten, such as yeast extract derived from barley. Some may contain hydrolyzed wheat protein. GFCO does not certify products as gluten-free if they contain hydrolyzed wheat protein.

13. Yeast spreads – Popular in the UK and “Down Under” and available in the U.S., these vegan spreads are made from yeasts derived from wheat, barley, oats, and rye.

14. Sausage – Could contain rusk, a twice-baked, gluten-containing bread that is used as a cereal filler in some types of sausage like British “banger” sausages. Some specialty or plant-based (meat-free) sausages could contain wheat gluten.

15. Beef jerky – Certain flavors of beef jerky – such as teriyaki – contain soy sauce.

16. Meat substitutes – Seitan is made of wheat gluten. Other “imitation meats,” such as certain imitation bacon brands, could contain gluten due to the use of vital wheat gluten or yeast extract, which may not be gluten-free. If products with yeast extract are not labeled or certified gluten-free, they should be avoided.

17. Meatless (veggie or vegan) pepperoni – Some brands use wheat gluten as a binder.

18. Meatless or vegan deli meats – Pre-sliced and packaged, these are often made with wheat gluten.

19. Sliced deli meats – They may contain added ingredients that could contain gluten as thickeners, such as wheat-derived dextrin or modified food starch. While these two additives are not always derived from gluten-containing grains, some are. Even if deli meats are gluten-free, watch out for cross-contact when deli workers use the same slicing machines for all products. One way to avoid cross-contact is with pre-packaged lunch meats that are labeled or certified gluten-free. Since deli meats are regulated by the USDA and not the FDA, contact the manufacturer if you have questions or concerns. 

20. Vegan hot dogs – Like other imitation meat products, some brands add wheat gluten to bind and may use yeast extract for flavor. 

21. Veggie burgers – Some brands are made with wheat gluten while others contain oat bran or rolled oats. To avoid potential cross-contact with oats which may contain gluten, find veggie burgers with oats that are labeled or certified gluten-free. See our article: “Are Oats and Oat Flour Gluten-Free?””

22. Imitation crab products – Some may use wheat starch to bind and unless labeled or certified, wheat starch cannot be assumed to be gluten-free. 

23. Restaurant eggs – Some restaurants add pancake batter to their scrambled egg and omelet mixtures to increase fluffiness and sweetness. Even though eggs are naturally gluten-free, these dishes are not.

24. Seasoned rice – Seasonings could be combined with gluten-containing ingredients like soy sauce solids (powder), wheat flour, or wheat starch.

25. Rice pilaf – Could be made with orzo (a small wheat pasta) or contain wheat flour.

26. Frozen vegetables – While plain vegetables – fresh or frozen – are naturally gluten-free, any with sauces, seasonings, add-ons or special shapes (like broccoli stars) could contain wheat gluten.

27. French fries – Say no to “crunchy,” “seasoned,” or “battered” fries or fries with gravy or sauces on them if you cannot verify that they use entirely gluten-free ingredients. French fries from fast food restaurants are most likely fried in the same oil as gluten-containing foods. Frozen seasoned fries from the grocery store could also contain wheat flour.

28. Pickles – Some brands are made using malt vinegar (derived from barley). 

29. Nuts – Plain, packaged nuts don’t typically contain gluten, but avoid nuts from bulk bins due to possible cross-contact.

30. Processed and flavored potato or corn chips – Some chip brands use wheat starch or whole wheat in their “reconstituted” chips (versus sliced potatoes or corn-only). Also watch out for flavorings derived from wheat or barley.

31. Ice pops and dessert bars – While fruit ice pops made with only fruit juice, water, and sweetener should be gluten-free, other frozen treats on a stick could contain gluten. For example, fudge bars could be made with malted barley extract. Ice cream bars and frozen yogurt bars could contain added ingredients, wheat starch that isn’t certified gluten-free, or flavorings containing gluten such as malt. 

32. Some milkshakes – If a milkshake is made with malt – a malted milkshake – it contains an ingredient derived from barley. If at an ice cream shop, make sure you know exactly what ingredients are added to your shake and make sure clean scoops are used to avoid potential cross-contact.

33. Licorice – Red and black licorice typically contain wheat flour as a main ingredient to bind the rest of the ingredients together. 

34. Energy bars/granola bars – Many are made with oats and are often not labeled or certified gluten-free. To avoid potential cross-contact with oats that may contain gluten, stick to bars with oats that are labeled or certified gluten-free.

35. Chocolate – Some additives, including emulsifiers and flavoring agents in certain chocolates or fillings, could contain gluten. Some specialty chocolates contain barley malt powder.

36. Specialty or flavored coffee and teas – Coffee alternatives could be made with roasted barley. Also watch out for roasted barley tea, including brand names that don’t mention barley.

[trents]

Excellent link, Kyndryl! Thanks. I will book mark that one for use here on the forum.

[Kyndryl]

8 minutes ago, trents said:

Excellent link, Kyndryl! Thanks. I will book mark that one for use here on the forum.

No problem. I think I had to learn the hard way by accidentally eating some of those products and having stomach pain and going through a list in my head of what I ate the day before. A lot of trial and error now I read labels like a hawk.