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 She Be Tested?

Reader

Recommended Posts

Reader Newbie
Reader
Posted

My 15 yr old was gluten-free for 4 years from ages 8-12. (weak positive blood test, negative biopsy) It alleviated her symptoms at the time. She suffered from severe nausea, constant vomiting, lethargy and failure to thrive. For two years, from age 6-8 she did NOT grow AT ALL! Not even a centimeter. Then she grew 4 inches in the first year after going gluten-free!

She has done well with normal growth for the last 3 years. At age 12 she was checked for antibodies after 8 weeks of eating wheat and no antibodies were detected. She returned to a regular diet.

However, for the last month or two, she has gotten sick everytime she eats something. Should I have her bloodwork done again?

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

Celiac.com Sponsor (A8-M):


Guhlia Rising Star
Guhlia
Posted

It is my understanding that once positive, always positive, even if it was just a weak positive. She was likely going through the "honeymoon" period when she did not react to gluten. This is common in children. If she had a weak positive blood test when she was a child, she needs to remain on the gluten free diet for life. I wish it could just go away like that, but sadly it doesn't and even a weak positive is still a positive. If she remains on gluten she increases her chances of developing further issues down the road including neuropathy, emotional problems, and cancer. I'm not trying to scare you, but it is really important for her to maintain a strict gluten free diet for life.

happygirl Collaborator
happygirl
Posted

What blood tests were run? There are five main tests that need to be run, and often doctors do not run the full panel, so that's why I'm asking.

Has she been gene tested to see if she has one or both of the Celiac genes (which are present in about 98% of Celiacs)?

I think that the positive dietary response is enough to say that she is gluten intolerant, at the very least!

chrissy Collaborator
chrissy
Posted

i'd test her again.

shayesmom Rookie
shayesmom
Posted
My 15 yr old was gluten-free for 4 years from ages 8-12. (weak positive blood test, negative biopsy) It alleviated her symptoms at the time. She suffered from severe nausea, constant vomiting, lethargy and failure to thrive. For two years, from age 6-8 she did NOT grow AT ALL! Not even a centimeter. Then she grew 4 inches in the first year after going gluten-free!

She has done well with normal growth for the last 3 years. At age 12 she was checked for antibodies after 8 weeks of eating wheat and no antibodies were detected. She returned to a regular diet.

However, for the last month or two, she has gotten sick everytime she eats something. Should I have her bloodwork done again?

With a previous positive blood test, positive dietary response and the current problems she is having being off diet....I'd be of the opinion that the test was accurate the first time around. She should be gluten-free.

It's really confusing to decipher the "weak" positives, "negative" biopsies and all the jargon being thrown around. But how I've understood things is that a "weak" positive is still a positive.....sorta how a faint blue line on a pregnancy test is still a positive indicator that you're pregnant. With time, the positive only becomes more positive. And as for a "negative" biopsy. I was told that a biopsy could never really be "negative". It can only rule Celiac IN, it can never rule it OUT. Damage to the intestine can be very patchy and multiple biopsies should be taken in order to determine Celiac.

The decision to re-test is yours and your dd's to make. But I would be very wary if your doctor is one who claims that Celiac can be "outgrown". This is a life-long disease. It is NEVER outgrown. And going gluten-free usually heals all the damage and reduces (and eliminates) antibodies being produced. For each time your dd goes on the diet and remains on it for long periods of time, she can then be tested and have someone proclaim her "cured" or "no longer Celiac". If she's Celiac, she'll just keep accumulating damage the minute she starts straying off of diet. And she will eventually test positive again.

This diet is a serious commitment. If you have doubts, get re-tested....but go to a doctor who really knows about this disease. You'll find a list of them on this site.

Good luck to you both! Hope you find some definitive answers.

Reader Newbie
Reader
Posted
  • Author

Thanks everyone! You confirmed what I was thinking. I will call the doctor today.

rez Apprentice
rez
Posted

definitely re-test her.

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

Celiac.com Sponsor (A8-M):


Reader Newbie
Reader
Posted
  • Author

The soonest the doctor can see her is May 7 :(

Archived

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

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


  • Member Statistics

    • Total Members
      131,991
    • Most Online (within 30 mins)
      7,748
    ZENken
    Newest Member
    ZENken
    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

    • Wheatwacked
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Wheatwacked · Posted

      Have faith, you will survive. I get mine from Pipingrock.com.  500 capsules of 10,000 IU for $22.  That is almost two years worth for me.  250 caps 5000 IU for $6.69 if you only take 5,000 a day.  It's like half the price of Walmart.
    • Wheatwacked
      Outgrow celiac?

      By Wheatwacked · Posted

      Testing can't alone be trusted.  Else why would it take so many years of testing and retesting and misdiagnosis to finally be told, yes you have Celiac Disease. As to what to eat, I like pre 1950 style food.  Before the advent of TV dinners.  Fresh food is better for you, and cooking from scratch is cheaper.  Watch Rachel Ray's 30 Minute Meals for how to cook.  Keep in mind that she is not gluten free, but her techniques are awesome.  Just use something else instead of wheat, barley, rye. Dr Fuhrman is a ex cardiologist.  His book Eat to Live and Dr Davis' book Wheatbelly were instrumental in my survival.
    • Scott Adams
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Scott Adams · Posted

      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      New Celiac Mama in My 30s

      By Scott Adams · Posted

      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Celiac and dermatitis herpetiformis has taken Me from Me

      By SusanJ · Posted

      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
×
×
  • 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.