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

Should I Get Other Dd's Tested?

ptkds

Recommended Posts

ptkds Community Regular
ptkds
Posted

I was just daignosed w/ celiac by a blood test, and my 17 m old dd was diagnosed by a blood test. We have 2 oder dd's ages 9 and 6. I really don't want to put them through the blood test but my dh does. He says he wants to have "proof" that they have celiac because he doesnt' feel comfortable telling people they have it without if being verified, especially for school.

My 9 yr old constanty gets stomach aches and diarrhea. She also gets dizzy at times and she is small for her age. My 6 yr old has occasional diarrhea, but she has a few behaviour problems (gets angry really easy and cries easily). She is also kinda small for her age and she has asthma.

So I made an appointment for wednesday to see their ped, but I just don't think it is necessary. I jsut wanted to test them by putting them on the diet and seeing if there is a difference. My dh is the one that wants to do the tests.

Any suggestions on what I should do? Which one of us is right??

Thanks,

ptkds

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

Celiac.com Sponsor (A8-M):


vampella Contributor
vampella
Posted

IMHO, you are RIGHT. why do the testing if there is such a strong history? Plus, the blood tests come up with false NEG's all the time.

There is no harm in getting them tested but, why does your DH care so much..if the diet works what other proof does he need?

I'm with you, let them be and put them gluten-free.

Char

Nikki2003 Contributor
Nikki2003
Posted
IMHO, you are RIGHT. why do the testing if there is such a strong history? Plus, the blood tests come up with false NEG's all the time.

There is no harm in getting them tested but, why does your DH care so much..if the diet works what other proof does he need?

I'm with you, let them be and put them gluten-free.

Char

Nicole was diagnosed in july of 06. I had my older dd tested because they have a certain % of having it also,Plus when she was a bit younger she has issues with constipation. We did the blood work and hers it positive also. She is having her biopsy on the 27th of this month.

Celina

shayesmom Rookie
shayesmom
Posted
I was just daignosed w/ celiac by a blood test, and my 17 m old dd was diagnosed by a blood test. We have 2 oder dd's ages 9 and 6. I really don't want to put them through the blood test but my dh does. He says he wants to have "proof" that they have celiac because he doesnt' feel comfortable telling people they have it without if being verified, especially for school.

My 9 yr old constanty gets stomach aches and diarrhea. She also gets dizzy at times and she is small for her age. My 6 yr old has occasional diarrhea, but she has a few behaviour problems (gets angry really easy and cries easily). She is also kinda small for her age and she has asthma.

So I made an appointment for wednesday to see their ped, but I just don't think it is necessary. I jsut wanted to test them by putting them on the diet and seeing if there is a difference. My dh is the one that wants to do the tests.

Any suggestions on what I should do? Which one of us is right??

Thanks,

ptkds

I'm with you on this one. With strong family history like that, it's much SAFER to just get them all on a gluten-free diet as opposed to waiting for a positive dx with blood/biopsy. To be honest, I'd probably be telling dh that if he wants the other kids tested, he needs to go in too. This does tend to be genetic and just because you have tested positive doesn't mean that he also isn't passing on the genes for it. ;)

As for feeling comfortable about telling people about this.....if the children respond well to the diet, there is absolutely nothing dishonest or unjustified in simply saying that the children are gluten intolerant. And it may benefit them in the future when applying for their own health insurance to not have the positive Dx show up on record.

I know that this is fairly early in the game for the Celiac diagnosis and that there are a lot of conflicting emotions that come along with this. I'm sure that your dh is as frustrated as you have been throughout this. But at some point, acceptance will set in and eventually routine and then it becomes second nature. You don't have to get them tested to put them on the diet. Trust me, you and your dh will KNOW if gluten is a problem when you do the diet.

And if it's of any consolation, a little over a year ago....I was really torn about not having a Dx for my dd. But we've found doctors who have been willing to help us in dealing with the school and who are in agreement that dd has serious problems with gluten. Our GP told me 2 weeks ago that he wouldn't recommned the testing now that we've gotten everything under control and dd is thriving. As he put it..."Why go through all the tests just to get a slip of paper telling you to do the gluten-free diet? You're already doing it successfully and have all your answers. You don't need a doctor to give you any more common sense than you've exercised. Celiac or not, your dd cannot tolerate gluten. What else do you want to know?". :) Now THAT was a first for us! lol! But I definitely agree.

2Boys4Me Enthusiast
2Boys4Me
Posted

FWIW, after my younger son was diagnosed my husband, older son (7 at the time), my mom and I all had blood tests.

They all came back negative. (None of my in-laws, nor my brother or sister got tested.)

Guest nini
Guest nini
Posted

don't put them through testing... with such a strong genetic predisposition and obvious symptoms simply put your entire family on the diet (if hubby objects tell HIM to get tested and scoped but tell him the rate of false negatives is too high)

my daughter tested negative and putting her through the blood draws was VERY traumatic and I would NOT do it again if I had it to do over. I would have put her on the diet as soon as I suspected gluten intolerance instead of waiting for a Dr. to give me permission to NOT feed my child poison everyday.

Here's the thing, I tested positive for Celiac shortly before her 3rd birthday, it was another 6 months before we put her on the diet AFTER her test results were negative... when we put her on the diet, she got well within A WEEK. Proof enough for me.

chrissy Collaborator
chrissy
Posted

i'd do the blood test if it were me. it is just a simple blood draw and the results come back pretty quick. i tested my whole family after we suspected one of the girls might have celiac---and we discovered that 3 of them actually have it. my oldest son has more symptoms than all 3 of the girls combined-----and he does not have celiac. there are other things that can cause symptoms.

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

Celiac.com Sponsor (A8-M):


tarnalberry Community Regular
tarnalberry
Posted

a blood test really isn't that awful. I'd do a blood test, and after that, do the dietary challenge (take them gluten-free for a month). this, of course, is predicated on the assumption that you wouldn't bother with an endoscopy. if you would, then blood test, endoscopy if results warranted, or dietary challenge if tests didn't warrant the endoscopy. either way, blood and diet testing. why do I suggest the blood testing? because with kids there *is* an issue getting other institutions to believe you, and just your word may not be enough for them.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      @rei.b, I understand how frustrating starting a new way of eating can be. I tried all sorts of gluten-free processed foods and just kept feeling worse. My health didn't improve until I started the low histamine AIP diet. It makes a big difference. Gluten fits into opioid receptors in our bodies. So, removing gluten can cause withdrawal symptoms...
    2. captaincrab55
      - captaincrab55 replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Finding gluten free ingredients

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal. My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet. I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free...
    3. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and...
    4. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long? DGP IgG antibodies are produced in response to a partial gluten molecule. This is different than what tissue transglutaminase antibodies are produced in response to. TTg IgA antibodies are produced in the intestines in response to...
    5. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,130
    • Most Online (within 30 mins)
      7,748
    Tony White
    Newest Member
    Tony White
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • 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.