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! My Daughter's Lab Results Are Confusing!

gillijl

Recommended Posts

gillijl Newbie
gillijl
Posted

Five years ago, my then 3 1/2 year old daughter's skin started breaking out very badly. It covered her stomach, the insides of her legs and the insides of her arms...sometimes her buttocks. We met repeatedly with a dermatologist and went through all kinds of antihistamines. They helped, but didn't eliminate the problem. I had to sleep with her to keep her from scratching herself raw. Her sheets were always dotted with blood.

Then, last year, her stomach started to bother her as well. She would feel very nauseous and was missing school, soccer, etc... Her pediatrician did some blood work and told me there was a 70% chance she was "allergic to wheat". Not knowing anything about wheat allergies or celiac, I started down the road of trying to eliminate wheat from her diet. After finally educating myself more about the difference between allergies and gluten intolerance, I decided we needed to find out if she had celiac disease.

Last week we went to an allergist. He knew nothing about celiac disease and we left more frustrated then ever. The one thing I did was to get a copy of last year's blood work. I found they had tested for tTg, IgG and IgA, none of which they bothered to explain in the slightest at the time. The tTg and IgA readings were normal, but her IgG result was out the roof (73). I guess this is where the pediatrician got the "70% chance of wheat allergy".

After reading up on those results, it looks like her blood work is inconclusive. My question is, who do I go to now? The pediatrician is obviously uneducated about what we're dealing with, and I know more than the allergist! Do I take her to a GI, even though I'm not sure if that's what she has? I should mention, her major complaint is her skin, but the areas she breaks out in are different than what I've read about for DH. It does improve drastically when she doesn't eat wheat for a few weeks....the hard part is keeping an 8-year old away from wheat!!!

Any advice would be GREATLY appreciated.

Thanks,

Jennifer

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

Celiac.com Sponsor (A8-M):


chrissy Collaborator
chrissy
Posted

a pediatric gi would be the one to see.

christine

slpinsd Contributor
slpinsd
Posted

my doctor said that of tTg, IgA, IgG, yes, tTg is more indicative of Celiac, but you only need one marker (IgG) to diagnose gluten sensitivity. I would also try a good naturopath if you can find one, that's who nailed it for me.

Kasey'sMom Enthusiast
Kasey'sMom
Posted

We thought my dd was allergic to wheat because her biggest symptom was skin rashes. She also had tempermant changes, and constipation. We saw 3 dermatologist and an allergist. Some of the Dr's thought the rash was related to food, while others did not. She was 2 at the time and her blood work for celiac disease was inconclusive. Her anti-gliadin antibodies were extreamlly high which signaled to us and her ped. that an immune response was occuring in the body to gluten. I was tested a few months ago and I had a positive ttg and ema.

My dd has had dramatic results with a gluten-free diet. We also had her tested for IgE inhalants IgE & IgG food allergies/sensitivities. We avoid dairy, eggs and other foods but finding out her food issues has been a blessing!

I also did a food diary that helped a great deal when meeting with the Dr's. :)

WGibs Apprentice
WGibs
Posted
my doctor said that of tTg, IgA, IgG, yes, tTg is more indicative of Celiac, but you only need one marker (IgG) to diagnose gluten sensitivity. I would also try a good naturopath if you can find one, that's who nailed it for me.

This is very interesting to me. I only had high IgG, and so my doc said there was nothing wrong with me and I should take Immodium. I decided to try gluten-free anyway, because I was desperate to feel better without popping pills constantly. My initial reaction was awesome -- my stools were better than they'd been in years. I actually realized that I'd forgotten what normal was. But now, after a month on the diet, the D is back. I was starting to think that the doctors were right and I was just kidding myself with the gluten thing. But maybe I'm not crazy after all; maybe I just need to give things more time.

Guest nini
Guest nini
Posted
This is very interesting to me. I only had high IgG, and so my doc said there was nothing wrong with me and I should take Immodium. I decided to try gluten-free anyway, because I was desperate to feel better without popping pills constantly. My initial reaction was awesome -- my stools were better than they'd been in years. I actually realized that I'd forgotten what normal was. But now, after a month on the diet, the D is back. I was starting to think that the doctors were right and I was just kidding myself with the gluten thing. But maybe I'm not crazy after all; maybe I just need to give things more time.

yep, one marker is sufficient to indicate that gluten is a problem... any dr. that says otherwise is operating on outdated information. If you have to take Immodium there IS something wrong with you. For years though I thought that it was normal to have constant D, and that everyone took Immodium all the time. Give yourself a lot longer than a month and make sure that everything is gluten free including makeup and shampoos and lotions etc... It took me a good 6 months to really see a major improvement in the D... and now almost 3 years into it, I still have occassional issues and constant muscle pain and fatigue... You aren't crazy. Listen to your body. It may be that you need to eliminate more than gluten until you get the D under control. Dairy and Soy would be the first things to look at...

WGibs Apprentice
WGibs
Posted
If you have to take Immodium there IS something wrong with you.

I completely agree with this! I have never actually taken Immodium. At first, I always felt that if my body was having D, it was trying to flush something out, and it was a reasonable response to something and I should let it run its course. It was only when it became constant that I got worried. The doctor thought it was really strange that I wouldn't be comfortable just taking Immodium every day. :blink:

You have no idea how reassured I am that my high IgG does mean something. Do you have an article or reference for the claim that one elevated test means gluten sensitivity at least? My mother is on my case to go back on gluten for EMA tests and endoscopy, but I'm really reluctant. Even with the return of the D, I don't feel as bad as I did when I still ate gluten. The doctors she works with tell her I should have this done, but it sounds like they are outdated. The only reason they are willing to believe that I have any issue with gluten is because of my dietary response...they think the IgG alone means nothing.

I will stick with it. I have checked all makeup, etc., I think, but you have inspired me to do a double check! And I think in general, I need to take my diet back to simpler things and slowly add things back in once I get it under control.

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

Celiac.com Sponsor (A8-M):


mcc011806 Newbie
mcc011806
Posted

My son had the same rash. His dermatologist, not being able to treat it with meds, biopsied the rash and sent the biopsy to a lab. His results indicated Dermatitis Herpetaformis, the rash that indicates gluten intolerance. A gluten free diet will clear it up eventually but it can take some time. Keep pushing the doctors to test, using a biopsy. This article is very useful to help educate people about celiac (even the doctors). Celiac has been under diagnosed in the US for many years. Open Original Shared Link

Hope this helps.

gillijl Newbie
gillijl
Posted
  • Author
My son had the same rash. His dermatologist, not being able to treat it with meds, biopsied the rash and sent the biopsy to a lab. His results indicated Dermatitis Herpetaformis, the rash that indicates gluten intolerance. A gluten free diet will clear it up eventually but it can take some time. Keep pushing the doctors to test, using a biopsy. This article is very useful to help educate people about celiac (even the doctors). Celiac has been under diagnosed in the US for many years. Open Original Shared Link

Hope this helps.

Thanks to all of you for your responses. I appreciate all the information. I would be really interested to hear more about your son's rash. Was it hive-like? Hers is normally on her stomach, and the insides of her thighs. When it gets really bad, it's up her neck and on the insides of her forearms as well. Since the rash is normally her only symptom, I think the dermatologist is probably the best path forward for us right now. Plus, I like our dermatologist and I think she would be the easiest to work with.

Thanks again!

Jennifer

Archived

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

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


  • Member Statistics

    • Total Members
      131,914
    • Most Online (within 30 mins)
      7,748
    ChrisMary
    Newest Member
    ChrisMary
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. 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:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • 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.