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

Two Positive Blood Tests

Budapest

Recommended Posts

Budapest Newbie
Budapest
Posted

Hi. We're new here. My son, who is four years old, was diagnosed with diabetes at 22 months. He has been tested yearly for celiac, and this time the results came back positive-- IgG level was 30, IgA was 119. The blood test was done a second time and was again positive.

We have been told that a biopsy is used to confirm the results. This would mean waiting another one or two months, between scheduling the surgery and waiting for the results. I'm wondering why the biopsy is so necessary-- what else could these blood results mean, besides celiac? Are children ever diagnosed without a biopsy?

It's frustrating to have to wait, though the doctors seem to think there's no need to rush. He does not seem to have obvious symptoms. He has seemed more tired and irritable lately, which his preschool teacher also noticed. Could this be related in some way?

In the meantime we are thinking a lot about how we would get started with the gluten- free diet.

Looking forward to hearing from you all... thanks.

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

Celiac.com Sponsor (A8-M):


happygirl Collaborator
happygirl
Posted

You may want to ask your doctor to run the more specific tests for Celiac - like the tTG IgA and the EMA IgA. I'm guessing that the tests you had done were the AGA IgA and the AGA IgG. No one test is perfect, but the tTG and/or EMA tests are more sensitive/specific than the AGA tests. After you get the results of those, you can then make a decision with more information. Your doctor probably can get you in sooner with a GI, especially if you stress your need for a quicker endoscopy with biopsy (not surgery!) Its a quick procedure with use of sedation, not general anesthesia. You can start the gluten free diet without the results - but you have to be gluten free until the testing is over. You don't have to wait to get the results to try the diet.

Diabetes is related to Celiac...you have a great doctor for monitoring your son or Celiac - many doctors do not.

Research has found that most Celiacs don't have what we think of as the "common" symptoms - GI related, usually. They think now that most Celiacs do not have the 'obvious' symptoms.

Welcome to the board! It is a great resource and you will learn a lot here.

kaiess Contributor
kaiess
Posted

My son, 9, type 1 diabetic also, was tested last year and his TTG was 95 (normal under 20). He has no symptoms that we can see and his scope came back negative. They discovered duodenal ulcers and thought maybe that was causing the high TTG. Anyways, we treated the ulcers then the TTG was repeated and it came back 149!! This was 6 months after the first test. I was panicking yet they were not worried too much seeing he has type 1 (could skew the results), and the fact that his biopsy was negative just 3 months before and no symptoms. They decided to wait, run a TTG again and if the results are higher they will scope again. I was told if he's over 200 it is almost certain Celiac diagnosis. We have just had that TTG drawn and are awaiting results. In the mean time I'm trying to figure out how to live life gluten-free if it comes to that. I also know of another girl here in town with the exact same results as our son and also Type 1, no Celiac symptoms. Our ped endo says she knows of a few kids with type 1 and these false negatives. We are hoping for the best but preparing for the worst just in case. Good luck, I know it's hard being patient. Our ped gastro will not diagnose unless there is a positive biopsy. We're in BC, Canada.

Kathy, mom to Jakob, 9 dx Type 1 diabetes Mar2004, pumping MM 522 + CGMS

kaiess Contributor
kaiess
Posted

Oh, also ask for the genetic marker tests. We had it done on our son and he has both markers. That does not mean he has or will have Celiac. What the test will tell you is you will NOT have Celiac if you don't carry any of the genetic markers.

Kathy

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. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Ferritin levels. And see what your hemoglobin looks like too, that will tell you if you are anemic? You can have 'low normal' levels that will not be flagged by blood tests. I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial...
    2. Mari
      - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

      Hi Katht - I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was...
    3. Colleen H
      - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Yes thyroid was tested.. negative Iron ...I'm. Not sure ... Would that fall under red blood count? If so I was ok Thank you for the detailed response..☺️
    4. Colleen H
      - Colleen H posted a topic in Coping with Celiac Disease
      0

      Methylprednisone treatment for inflammation?

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines? Did it work ?? Thank you !!
    5. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse. But it is important not to stop the treatment. Regarding your problems with anxiety, again that is another symptom of a B12 deficiency. I didn't know...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,879
    • Most Online (within 30 mins)
      7,748
    Peta Dunn
    Newest Member
    Peta Dunn
    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

    • cristiana
      Ibuprofen

      By cristiana · Posted

      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      New here

      By Mari · Posted

      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Ibuprofen

      By Colleen H · Posted

      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
    • Colleen H
      Methylprednisone treatment for inflammation?

      By Colleen H · Posted

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines?  Did it work ??  Thank you !! 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
×
×
  • 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.