Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Confused Two Kids Positive Parents Negative

dcns65

Recommended Posts

dcns65 Apprentice
dcns65
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

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 Community Regular
wheeleezdryver
Posted

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 Collaborator
saintmaybe
Posted

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 Contributor
ElseB
Posted

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 Apprentice
dcns65
Posted
  • Author

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 Mentor
ravenwoodglass
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Roda Rising Star
Roda
Posted

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.

  • 1 month later...
dcns65 Apprentice
dcns65
Posted
  • Author

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 Proficient
psawyer
Posted

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 Rising Star
Roda
Posted

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 Collaborator
AVR1962
Posted

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 Proficient
mushroom
Posted

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 :lol:

Darn210 Enthusiast
Darn210
Posted

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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.