Confused Two Kids Positive Parents Negative

[dcns65]

My son has been diagnosed with Celiac Disease. At age 13 he wasn't gaining weight or height, his appetite was minimal and he was becoming sad. He also has ADHD and mild autism. The pediatrician was great about ordering a Celiac test right away and also checked his thyroid levels due to an enlarged thyroid upon palpitation. His results came back EXTREMELY high for hypothyroidism and Celiac. (TSH-R very high over 200) and Tissue Transglutaminases AB IgA >300) A biopsy confirmed the diagnosis and he's been feeling better since going gluten-free.

Next my 16 year old daughter was tested. Her results came back slightly elevated for Celiac (not sure what the numbers are yet-will find out Tuesday) Her thyroid numbers were slightly elevated (she's taking thyroid meds now) and her Vitamin D and iron were low (not atypical for a female teen). She is totally asymptomatic. Excellent student, happy teen, dances 3-4 hours a day and danced 5-6 hours a day for 6 days a week during the summer. Eats carbs all the time (craves them in fact!) She sees the gastroenterologist in November and we will have her biopsied.

Husband and I both were tested. I don't have my numbers (but have requested them)but they say I'm negative. I'm usually fine with stomach issues unless I get stressed and then I suffer from bloating and gas. My husband was diagnosed with hypothyroidsim about 10 years ago. He's had constipation issues the past 5-6 years and eats Activia daily which helps. When he requested to be tested for Celiac the PA said he couldn't have it because he's had colonoscopys and they haven't mentioned Celiac. We received his lab results today in the mail. All it reports is "IgA=149 normal range 70-400. This means no Celiac".

So what does this all mean? Should we pursue more testing for my husband or myself? My kids pediatrician seems to know more about Celiac than either of the Physician Assistants that we saw. (We LOVE our pediatrician, she apologized for not testing my son earlier, but we chalked it up to the thinness in our family, concerta and his picky eating)

dcns65

[ravenwoodglass]

My son has been diagnosed with Celiac Disease. At age 13 he wasn't gaining weight or height, his appetite was minimal and he was becoming sad. He also has ADHD and mild autism. The pediatrician was great about ordering a Celiac test right away and also checked his thyroid levels due to an enlarged thyroid upon palpitation. His results came back EXTREMELY high for hypothyroidism and Celiac. (TSH-R very high over 200) and Tissue Transglutaminases AB IgA >300) A biopsy confirmed the diagnosis and he's been feeling better since going gluten-free.

Next my 16 year old daughter was tested. Her results came back slightly elevated for Celiac (not sure what the numbers are yet-will find out Tuesday) Her thyroid numbers were slightly elevated (she's taking thyroid meds now) and her Vitamin D and iron were low (not atypical for a female teen). She is totally asymptomatic. Excellent student, happy teen, dances 3-4 hours a day and danced 5-6 hours a day for 6 days a week during the summer. Eats carbs all the time (craves them in fact!) She sees the gastroenterologist in November and we will have her biopsied.

Husband and I both were tested. I don't have my numbers (but have requested them)but they say I'm negative. I'm usually fine with stomach issues unless I get stressed and then I suffer from bloating and gas. My husband was diagnosed with hypothyroidsim about 10 years ago. He's had constipation issues the past 5-6 years and eats Activia daily which helps. When he requested to be tested for Celiac the PA said he couldn't have it because he's had colonoscopys and they haven't mentioned Celiac. We received his lab results today in the mail. All it reports is "IgA=149 normal range 70-400. This means no Celiac".

So what does this all mean? Should we pursue more testing for my husband or myself? My kids pediatrician seems to know more about Celiac than either of the Physician Assistants that we saw. (We LOVE our pediatrician, she apologized for not testing my son earlier, but we chalked it up to the thinness in our family, concerta and his picky eating)

dcns65

It looks like the only test done on your husband was the total IGA and that isn't a celiac test. If he has low total IGA then that would mean his antigliadin IGA related tests would be a false negative. But even with normal IGA we can still have false negatives with testing.

You and your husband should both have a full celiac panel done. Celiac is strongly genetic but not everyone who has the associated genes develops celiac. However if you have symptoms a dietary trial when all testing is finished is a good idea, and you both sound like you may have symptoms.

[wheeleezdryver]

Husband and I both were tested. I don't have my numbers (but have requested them)but they say I'm negative. I'm usually fine with stomach issues unless I get stressed and then I suffer from bloating and gas. My husband was diagnosed with hypothyroidsim about 10 years ago. He's had constipation issues the past 5-6 years and eats Activia daily which helps. When he requested to be tested for Celiac the PA said he couldn't have it because he's had colonoscopys and they haven't mentioned Celiac. We received his lab results today in the mail. All it reports is "IgA=149 normal range 70-400. This means no Celiac".

So what does this all mean? Should we pursue more testing for my husband or myself? My kids pediatrician seems to know more about Celiac than either of the Physician Assistants that we saw. (We LOVE our pediatrician, she apologized for not testing my son earlier, but we chalked it up to the thinness in our family, concerta and his picky eating)

dcns65

I hope your husband's PA realizes that in general, Celiac isn't found via Colonoscopy!!

I was diagnosed with hypothyroidism about 8 1/2 years ago... had had symptoms for about a year before I was diagnosed. I, too had constipation. Had to take a fiber supplement daily. I have been gluten- free one year and two months now, and in these last two months, my constipation issues have improved greatly, with the help of gluten- free yogurt (NOT Activia). I can count on one hand how many times I've had to take a fiber supplement in the last two months!

[saintmaybe]

Celiac is diagnosed via endoscopy/biopsy, not colonoscopy. Also, though it may be expensive, genetic testing may be worth the money, to tease out the disease vectors and relationships in your family. If you and your husband are both symptomatic as well, it's unclear whether you you both have one or two celiac genes (I suspect one since you both seem to be fairly mild, but you never know). Nevertheless, the gene types, and number of copies can give you some idea of disease severity. Bearing in mind that genetics is still a new science,and they still haven't fully mapped all of the associated celiac genes.

Also, even if you do have the genes, there's only a 40% chance of developing celiac over the span of your life. It's perfectly reasonable that your kids each potentially got one copy from you and one copy from your husband of a celiac gene. Meanwhile, your nonceliac gene may be masking the celiac gene's effects. Or your celiac gene may not be turned on at all.

With two kids in the house who are celiac, it'll probably be easier on your budget just to go gluten free at home altogether while they're there. My suspicion is you'll feel so much better, you won't want to go back eating gluten, even when you have the chance!

[ElseB]

After I was diagnosed my parents got tested and both were negative. But at least one of them must have the genes that they passed on. As others have noted, you can have the genes but not develop the disease.

[dcns65]

The rest of my husband's test results came back and his Ttg IgA was 110. We are in the process of changing doctors for him since the current office does not seem to believe that he is Celiac. They don't feel the hyperthyroidism and constipation or indicators of Celiac. Once my daughter has had her biopsy the whole family will be going gluten-free.

[ravenwoodglass]

The rest of my husband's test results came back and his Ttg IgA was 110. We are in the process of changing doctors for him since the current office does not seem to believe that he is Celiac. They don't feel the hyperthyroidism and constipation or indicators of Celiac. Once my daughter has had her biopsy the whole family will be going gluten-free.

That sounds like a wise thing to do. I hope everyone is feeling better soon.

[Roda]

Yep it sounds as if Dad has it too along with the kids. Good that you are changing doctors! BTW constipation can be a sign of celiac. I never had D but suffered constipation off and on my whole life. My oldest son has battled constipation since birth also. He is not celiac, but is gluten intolerent. Youngest son is celiac and never had bowel issues except some fat in the stool once or twice. When he accidently gets glutened he gets constipated.

[dcns65]

I thought I'd give an update to testing for my DD. Her gut biopsy came back normal, but the GI that did the endoscopy said she would probably be o.k. eating gluten for another 6-12 months and then the disease would start kicking in. We have two choices, go gluten-free now or wait 6 -12 months and repeat the Celiac panel. We aren't taking our chances and DD will start eating gluten-free after the holidays. Now we just need to find a good nutritionist with celiac disease experience and the dietary needs of a serious dancer.

DH will also be getting tested but we are looking for the right doctor first.

[psawyer]

Many people have the genes but do not ever develop celiac disease. My understanding is that about one in ten with the genes get celiac disease. That is a high enough ratio to justify testing first-degree relatives of diagnosed persons with celiac disease.

[Roda]

I thought I'd give an update to testing for my DD. Her gut biopsy came back normal, but the GI that did the endoscopy said she would probably be o.k. eating gluten for another 6-12 months and then the disease would start kicking in. We have two choices, go gluten-free now or wait 6 -12 months and repeat the Celiac panel. We aren't taking our chances and DD will start eating gluten-free after the holidays. Now we just need to find a good nutritionist with celiac disease experience and the dietary needs of a serious dancer.

DH will also be getting tested but we are looking for the right doctor first.

The fact that she had a positive blood test, even with the negative biopsy, sounds like you are doing the best thing for her. Why on earth would the doctor recommend her waiting until damage to be done to go gluten free? I don't get it. BTW, how is your hubby doing?

[AVR1962]

This all gets a little confusing and at times I am not sure I completely understand either. However, it is my understanding that a person can have celiac but it can stay in a remissive state and they can live this way their whole lives or something can happen and it will flare.

I am 48, my adult daughters (26 & 30) have never been tested but both are on gluten-free diets. I have 4 grandchildren 5-11 that are also on gluten-free diets. My Gpa recently passed and was having symptoms many years before his death same as to what I developed once my celiac flared so I do beleive he had it. I have an aunt diagnosed with schzophrenia. My point here is that to me now knowing more I can see where it runs in my family. I was the one without symptoms, I was the one with the steal gut who could eat whatever. But then one day it hit me. I am the only one in the family with a diagnosis of celiac.

I do beleive mine was triggered by stress.

[mushroom]

My point here is that to me now knowing more I can see where it runs in my family. I was the one without symptoms, I was the one with the steal gut who could eat whatever. But then one day it hit me.

I do beleive mine was triggered by stress.

During my twenties I was like you (I had early problems, they went AWOL). I had a friend who said she loved going to lunch with me because I was the only one who didn't say "I can't eat that." We are no longer in contact. She should see me now

[Darn210]

DH will also be getting tested but we are looking for the right doctor first.

You mentioned earlier that you would be taking your house gluten free. I just want to remind you that your husband needs to stay on gluten until all testing (blood and endoscopy) is done. Otherwise you greatly increase your risk of a false negative.