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

Help! What Should I Do Next?

rcritch22

Recommended Posts

rcritch22 Newbie
rcritch22
Posted

My 3 year old daughter has been losing her hair for about 3 weeks now. Her hair has thinned to almost nothing and is not the same texture or color anymore. The doctor (not her normal pediatrician) said it was normal and that some kids lose their hair when they go through growth spurts. She was also checked for a rash she has on her bottom. The doctor said it was impetigo and perscribed an antibiotic. I mentioned that my mom has celiac disease, but she immediately said that she is not worried about that because my her weight gain is fine.

To make a long story short, she is continues to lose her hair at a rapid rate. She continued to have outbreaks of the rash even while on the antibiotic. We took her to the doctor again (this time she saw her regular ped.) and they finally ordered blood work. The results indicated: slightly anemic, thyroid normal, blood count normal, and no Lupus. We are waiting to get the "heavy metals" (whatever that is)results back next week. They did an IgA blood test but I think that is all - and that to was negative.

She is seeing a dermotologist next week as well. Should I request further testing for celiac disease?

Thank you for your input.

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

Celiac.com Sponsor (A8-M):


Guest Viola
Guest Viola
Posted

Perhaps you should ask for more Celiac testing and DH testing. They could biopsy that rash. It may well just be an allergy, but if it is in the family it should be caught as early as possible.

lovegrov Collaborator
lovegrov
Posted

Doing just an Iga is insufficient. A certain percetage of people are Iga deficient and will NEVER test positive because of that. The full panel is Iga, total Iga (this shows if you are Iga defincient or not), Igg and Tta. The rash, as long as it's active, can also be biopsed for DH.

richard

KaitiUSA Enthusiast
KaitiUSA
Posted

Richard is correct. The full panel needs to be done. She could be IgA deficient so otherwise positive tests would show negative. Also getting the rash biopsied is definitely not a bad idea.

*Anemia is linked with celiac too

plantime Contributor
plantime
Posted

Get the full panel run. If your mom has celiac disease, then there is a good chance that you are at the least a carrier (have >you< been tested?) and that your daughter might have it.

rcritch22 Newbie
rcritch22
Posted
  • Author

Thank you for your input. I am not convinced it in NOT celiac disease. I will request a full panel at the Dr. tomorrow. I mentioned the tTG test at her last appt., but the pediatrician said it would take 2 weeks and that the IgA would only take a couple of days - UGH!

I have not been tested (yet).

Is it possible to have normal weight gain and still have celiac disease? The pediatricians seem to be so headstrong about this - her weight gain is fine = it is not celiac disease.

Thanks.

KaitiUSA Enthusiast
KaitiUSA
Posted

That is common for people to think if you do not lose weight that you can't have celiac. That is so false. Some people have weight loss but just as many people can have weight gain. You can also be a normal weight. There are over 200 symptoms associated with celiac and symptoms among people vary. In fact, some people get no symptoms at all.

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

Celiac.com Sponsor (A8-M):


ianm Apprentice
ianm
Posted

I gained a LOT of weight so don't listen to the doctors when they say that only weight loss occurs with Celiac.

egardner Newbie
egardner
Posted

My GI doc says weight gain is actually as much of a symptom of Celiac as weight loss, either represents a malabsorbtion, which is what Celiac is. He said so many people are misdiagnosed because they have not lost, but instead gained weight. It is proven that celiac disease can seriously screw up your thyroid, and that can mean it makes it EITHER hyperactive or hypoactive. Hypoactive thyroid would cause a weight gain. Kaiti is right, there are a ton of symptoms! ;)

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. Scott Adams
      - Scott Adams commented on Scott Adams's article in Product Labeling Regulations
      2

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

      You’re raising a very real and very well-documented problem, and you’re absolutely right to be frustrated. Medication labeling is a major blind spot for people with celiac disease, because unlike food, drug manufacturers are not required to clearly disclose the source of binders, fillers, or excipients—even when they may be derived from wheat. That puts ...
    2. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      nothing has changed

      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies c...
    3. Scott Adams
      - Scott Adams replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Is it gluten?

      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    4. Seaperky
      - Seaperky replied to lizzie42's topic in Traveling with Celiac Disease
      2

      Trip to Anaheim/Disney

      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease. Thier gluten free options are awesome.
    5. Scott Adams
      0

      When Gluten-Free Food Is Unavailable: A Child's Struggle Highlights the Hidden Risks for People with Celiac Disease

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,350
    • Most Online (within 30 mins)
      7,748
    Sarah S
    Newest Member
    Sarah S
    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

    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Is it gluten?

      By Scott Adams · Posted

      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      Trip to Anaheim/Disney

      By Seaperky · Posted

      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Churley · Posted

      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
×
×
  • 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.