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

So Frusterated! Still No Answers!

mommyetb

Recommended Posts

mommyetb Apprentice
mommyetb
Posted
:angry: My DS got all his blood tests back. The first one was inconclusive b/c his igA was too low to read it. Now his other tests have come back negative! Now what? Maybe we don't belong here! I thought he was doing so much better on gluten-free diet. His skin is better, he sleeps better, no more vomiting or "D". Now the doc wants us to decide if we want to do a biopsy. But he is on gluten-free now so the biopsy would not work right? Oh, what is wrong with this little man? They ruled everything else out when we were in the hospital for 4 days. Celiac was really the only thing left. Everone was pretty sure that is what it would be but now it is negative! I am so frusterated! :wacko:
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Rachel--24 Collaborator
Rachel--24
Posted

How old is your son? Tests can be unreliable under the age of 2. Actually the tests can be unreliable at any age but particularly under 2. If he is improving on the diet he obviously is intolerant to gluten. He may not have Celiac but an intolerance can cause the same symptoms and treatment is the same whether he's Celiac or intolerant. Going ahead with the biopsy is a personal decision but he should not be started on the diet if you plan on further testing.

Guest nini
Guest nini
Posted

your best answer is the fact that he has responded positively to the diet. The tests are extremely unreliable, especially in children. My daughter's bloodwork was inconclusive (but only because they did not do the correct tests) She did NOT have a biopsy and never will, but she most certainly IS gluten intolerant. She reacts violently and immediately to gluten and is such a different, healthy child without it.

I would suggest keeping him gluten free, do not worry about further testing. Accept that he is simply gluten intolerant and be thankful it was discovered before it became full blown celiac.

You absolutely belong here. Don't give up. Trust your instincts. You know that gluten is the problem, what more do you need to know? If he did have a biopsy and IF it confirmed damage (highly unlikely at this point if he's been gluten-free) the treatment would still be the same, a strict adherance to the gluten free diet and that diet will heal any existing damage.

Guest greengirl
Guest greengirl
Posted

I understand your frustration! I went gluten free despite negative bloodwork and negative biopsy (although

they did find intestinal ulcerations and inflammation, just not the typical flattened villi of Celiac). I have been through many other tests including camera capsule endoscopy, small bowel barium test, and small bowel enterocyclis (really nasty, nasty test!!). Nothing was conclusive, until I ordered the gluten sensitivity stool and gene panel from Enterolab. My Iga was elevated, indicating a gluten sensitivity and I found out that I have 2 copies of the gluten sensitive/celiac gene, one from each of my parents. This was the validation I needed, despite the miraculous results of the gluten free diet. I am disappointed that my doctor was not able to give me any answers after all the tests I did, but I think this is pretty typical in a lot of cases.

It sounds like your son is much better on the gluten free diet, so stick with it!! It takes time for the intestine to heal, so a biopsy could still show damage, but if he is gluten sensitive and not Celiac you won't get a confirmation from the biopsy (although gluten sensitivity can do serious damage, as well). And even if he is celiac, some doctors won't diagnose it unless the villi is completely flattened. You don't want to wait until the damage is that severe for a diagnosis! Maybe check out Enterolab's website (www.enterolab.com). It is a non-invasive stool test and it can still detect gluten sensitivity and celiac even after a gluten free diet has been started (up to 24 months, I think.)

Good luck!

Christine

aikiducky Apprentice
aikiducky
Posted
:angry: My DS got all his blood tests back. The first one was inconclusive b/c his igA was too low to read it. Now his other tests have come back negative!

Doesn't the low IGA mean that he's IGA deficient, or am I confusing things? It would mean that your son's blood tests for celiac will always be negative, even if his intestines were completely eaten away, because he simply doesn't produce the antibodies that they are looking for.

If he feels better gluten free, I hope you will keep him gluten free!

Pauliina

ravenwoodglass Mentor
ravenwoodglass
Posted
:angry: My DS got all his blood tests back. The first one was inconclusive b/c his igA was too low to read it. Now his other tests have come back negative! Now what? Maybe we don't belong here! I thought he was doing so much better on gluten-free diet. His skin is better, he sleeps better, no more vomiting or "D". Now the doc wants us to decide if we want to do a biopsy. But he is on gluten-free now so the biopsy would not work right? Oh, what is wrong with this little man? They ruled everything else out when we were in the hospital for 4 days. Celiac was really the only thing left. Everone was pretty sure that is what it would be but now it is negative! I am so frusterated! :wacko:

For me the repeated neg blood tests caused years of disability and pain. Trust the dietary results the blood tests for many of us are worthless. If he is doing better keep him gluten-free and if you really need something on paper maybe Enterolab gene testing might be the way to go.

chrissy Collaborator
chrissy
Posted

your son is IgA deficient, so he needs to have a completely different testing done to know if he really has celiac. IgA deficiency is something that can go along with celiac, in fact, celiac can actually cause IgA deficiency. someone with celiac is 10x more likely to be IgA dficient than the rest of the population. one of my boys is IgA deficient. our ped gi had blood work done through promethius lab in california to do gene testing and some other fancy testing to see if he has celiac. i am just waiting for the doc to call me with the results.

christine

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

Celiac.com Sponsor (A8-M):


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. Theresa2407
      - Theresa2407 replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Probiotics

      thank you for your advice. I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated. I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    2. KathyR37
      - KathyR37 replied to KathyR37's topic in Coping with Celiac Disease
      2

      New here

      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and gloves when cooking for them. One huge problem...
    3. Scott Adams
      - Scott Adams replied to KathyR37's topic in Coping with Celiac Disease
      2

      New here

      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are fee...
    4. KathyR37
      - KathyR37 posted a topic in Coping with Celiac Disease
      2

      New here

      I am new here but celiac disease is not new to me. I was diagnosed with it at age 60. At the time I weighed a whopping 89 pounds. I was so ignorant to celiac so I buried myself in learning all about it and looking for food I could eat. I lost so much weight and stayed sick all the time. So to combat the sickness I was give all sorts of meds for loose bowels...
    5. Scott Adams
      - Scott Adams replied to Colleen H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Celiac attack confusion and anxiety

      This article, and the comments below it, may be helpful:
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,808
    • Most Online (within 30 mins)
      7,748
    mhendy123
    Newest Member
    mhendy123
    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

    • Theresa2407
      Probiotics

      By Theresa2407 · Posted

      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
      New here

      By KathyR37 · Posted

      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      New here

      By Scott Adams · Posted

      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • KathyR37
      New here

      By KathyR37 · Posted

      I am new here but celiac disease is not new to me. I was diagnosed with it at age 60. At the time I weighed a whopping 89 pounds. I was so ignorant to celiac so I buried myself in learning all about it and looking for food I could eat. I lost so much weight and stayed sick all the time. So to combat the sickness I was give all sorts of meds for loose bowels and vomiting. All that just made me sicker. Eventually I chucked it all and went back to eating like I had all my life. Now I am from the south and biscuits and gravy are a big part of our food, as are breaded foods, pasta, and sandwich bread. Through the years I would try to do the gluten free thing again and am doing it now. It has not helped any. Within and hour of eating I have to run to the bathroom. I am now 75 and am wondering if I should just forget it and eat what I like, take Immodium and live the best I can. I cannot eat before going anywhere for fear of embarrassing myself. Family and church dinners are out of the question unless I eat and run straight home. I am so frustrated I just want to sit down and cry or throw something. Does everyone go through all this?
    • Scott Adams
      Celiac attack confusion and anxiety

      By Scott Adams · Posted

      This article, and the comments below it, may be helpful:    
×
×
  • 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.