Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Test To Run To Check For Celiacs?


dfurlong

Recommended Posts

dfurlong Newbie

I would like to have lab work run on my daughter before trying a gluten free diet. If I am requesting these tests (blood work), which ones do I request? I know when an endo ran blood tests on me, it was for one thing, and after finding out the result (negative) and doing some research, I found out it was a test that seems to have a lot of false negative. I don't remember what it was though.

Any suggestions to what I should ask for since I have a physician's assistant that will probably run the specific tests I ask for?

Thank you,

Dawn


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



Celiac.com Sponsor (A8-M):



jerseyangel Proficient

Hi Dawn,

You should ask for the Celiac Panel--all 5 of them--

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

Best of luck :)

dfurlong Newbie

Thanks! We went on Friday for lab work. Of course, I won't be surprised if the tests I asked for are not the tests that show up. At this point, I don't much care. We are giving the gluten free diet a try. Doctors are just stupid when it comes to this, and we care more about feeling better at this point than trying to have someone say that blood work justifies that gluten is (or shouldn't be) a problem. We all know that does not always happen!

This is for my 14 yr old daughter, chronic fatigue, headaches, dizzyness, nausea (all in varying degress, combinations) for the past 1-1/2 years. She has Hashimoto's, is low in iron. I have Hashi's/anemia/adrenal fatigue/gluten sensitivity (never diagnosed celica, but gluten free). She is currently on a steriod, and has been for the past month. I asked the doctor if this would affect the test (seeing as this would have an anti-inflammatory effect). He said he didn't think so, but I am not so sure. Does anyone know if this would have a negative effect?

I'll post the results when I get them.

Dawn

  • 2 weeks later...
dfurlong Newbie

We did do the blood work on my 14 year old, and of course everything showed negative. I don't have a copy of the lab work, but was told a celiac panel was run. Meanwhile my daughter did go on a gluten free diet for 2 weeks. She had a headache after the first meal, but the headache went away (Friday night). Then by later Saturday afternoon, she had a mild continuous headache, and noted that she was very tired when trying to work on a school project. Sunday brought a more moderate headache (all day) with a little bit of dizzyness and nausea by last night. This morning, moderate headache, nausea. She ate her final meal last night (she says). A chicken/egg salad sandwich! She recognizes eating is causes her to feel sick, thankfully...makes it much easier.

Meanwhile my older daughter had decided to do a gluten free trial. She had been having a head buzzing (or dizzyness)...brain fog, difficulty concentrating and focusing, tiredness. She noted that she was feeling better (none of that head buzz thing and not being able to focus/concentrate). She decided to eat a ding-dong yesterday afternoon. Within a couple of hours, she had quite a good headache and major dizzyness. This just sent her over the edge. Major tears, frustration. Anger and wondering how an ingredient can cause one to feel bad. Not wanting to eat different than her friends. Wondering how she will live on campus at college because she was planning on eating alot of Ramen noodles! She said she hadn't taken her iron yesterday, which can cause her to feel off. She doesn't want to believe this is a problem, but when I told her...okay...you have to be consistent with your iron, we can have your thyroid checked again, etc, maybe it is something else (though I don't believe it is...but she was so emotional)....she commented that it was quite a darn coincidence that she felt okay before eating what she ate (and had been feeling better) and then after eating it...she felt so bad. She couldn't focus on her homework even.

I kind of expected more fight from my younger daughter, she was such a carb addict. BUT...I think that she has felt so awful for the past almost 2 years...and sees she can feel good...that while it is a bummer...it is worth it to not eat the gluten. For my oldest daughter, it is pretty rapid onset. AND...she has always been a more conscientious about her food choices, preferring fruits/veggies and whole grains. It is a definite change. I still get angry on occasion. It is a grieving process of sorts.

My older daughter has not had any tests done. Mostly I feel like it isn't worth the time/energy. And, she has already gone gluten free for 2 weeks. With such a reaction yesterday, I don't see her being able to keep eating gluten again. None of our tests seem to say celiac anyway.

I think we might all be gluten intolerant rather than celiac. Not a one of us has the "typical" celiac symptoms the dumb doctors look for (gasto in nature). We all seem to experience symptoms that are more neurologic in nature. I still use the regular toaster to toast my gluten free waffles, and don't seem to notice anything. I think about this often and wonder if I am fooling myself and am causing damage, and have thought about getting the separate toaster, etc. I think because I feel okay, I haven't taken any steps. Both my daughters don't want to have anything to do with the bread, and are new to gluten free...so everyone is still learning their limits. Meanwhile, I am stocking up on the gluten free products that they do like and working on finding others.

Dawn

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Leslie Clark's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Hidden Gluten in distilled vinegar

    2. - Manaan2 replied to Leslie Clark's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Hidden Gluten in distilled vinegar

    3. - BIg Nodge replied to BIg Nodge's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Opinions on my test results/symptoms

    4. - Dawn Meyers replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines

    5. - Scott Adams replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,857
    • Most Online (within 30 mins)
      7,748

    FranciL
    Newest Member
    FranciL
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @Manaan2, I was on Miralax for several months after I crushed three vertebrae and fractured my hip.  The compression fractures of my vertebrae affected the Vagus nerve that stimulates digestion and intestinal movement, peristalsis. Miralax just didn't relieve the constipation I was experiencing at all.  Nothing budged.  I tried Milk of Magnesia (magnesium oxide) which pulls water into the digestive tract, and found that rather harsh and dehydrating.   Bad idea. I was already taking thiamine in various forms, Benfotiamine, TTFD (tetrahydrofurfuryl  disulfude), Lipothiamine and Allithiamine.  Click on my name, then Activities in the pull down menu to get to my blog to learn more about my journey with thiamine.   Since we need more thiamine when we are physically ill and emotionally stressed, I decided to focus on TTFD,  Benfotiamine, and magnesium l-threonate.  Within a week of increasing my doses a bit, my constipation was gone.  It took several more months to heal the compressed nerve damage.  For pain, I take a combination of TTFD, Pyridoxine B 6, and  Cobalamine B12 which together have an analgesic effect.  I can't function with pharmaceutical pain killers, besides they cause constipation.   Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Yes, I did just stop the Miralax, but I wasn't on it as long as your daughter.  Yes, there's a difference between adults and children.  Yes, my circumstances were different than your daughter's, but thiamine deficiency does affect the nerves and the brain.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function (which activates the Vagus nerve and controls digestion).   I recommend you visit Dr. Chandler Marrs' website, hormonesmatter.com.  Dr. Marrs worked with Dr. Derrick Longsdale, a pioneer in thiamine research, specifically with children and autism spectrum disorders.  She has been very helpful to me when I reached out to her.  She would be better able to guide you about your daughter's care. https://hormonesmatter.com/sibo-ibs-constipation-thiamine-deficiency/#google_vignette Do stay in touch, please.  You can start another thread or personal message me any time.  My heart goes out to you, your husband, and especially your daughter.   Namaste
    • Manaan2
      @knitty kitty  The information you've provided is invaluable!  I have a lot more homework to do before we make the official switch but you have significantly increased my hope that we can get her off Miralax (she started at 3 years old and is almost 8!).  This weekend my husband and I plan to solidify all the details for a start point, then adjust as we go along.  I realize that everyone's body is different, then there's also the fact that she's a child but just out of curiosity if you don't mind sharing and if you'd rather not, no problem at all-how long did you take Miralax before switching and when you switched, did you just completely stop the Miralax or was there a period where you did Miralax and the supplements?  I plan to research that piece this weekend but just curious what you did.  
    • BIg Nodge
      Scott, thanks so much for the thoughtful replies. My doctor did actually just re-order thyroid labs to see what is going on with my TPOs. I agree that will be interesting information.  I think I know the answer to this, but as far as the biopsy . . .. that would be quite conclusive as far as celiac goes, but a negative result would not rule out NCGS, correct? Does NCGS also cause damage to the lower intestine/leaky gut?  I appreciate the thought that I should be open-minded to other causes. I did not have dysautonomia on my radar, so I will look into that. From a quick scan at the potential symptoms it seems like almost anyone could convince themselves they have it, very broad! I can see why that is a tricky one to diagnose. I did also show low vitamin D, I'm in New England so that is somewhat common. I have a memory of low iron on some lab result as well but I can't find it, so I'll look into that. My cholesterol is high too, so working on that.  While the initial adjustment was tough, I have actually adapted fairly well to going gluten-free at home. The tough part for me is I love eating out and traveling, so that has been a challenge. I suppose if the answer ends up being NCGS then I could maintain a mostly gluten-free diet but also experiment with the occasional splurges. Snowboarding just doesn't feel right without a beer in the lodge . . ... cider is just not the same!  Thanks again.  
    • Dawn Meyers
      I did some research and found out that vaccines put preservatives, sugar alcohols and metals in them. Which I have a intolerance too.  I was supposed to do testing to find out metal's I was allergic to because I can't  wear jewelry of any kind. Mayo felt I had other allergies also.
    • Scott Adams
      For individuals who have experienced negative reactions to the flu vaccine, there are alternative formulations that may reduce the risk of allergic responses. Traditional flu vaccines are typically produced using egg-based methods, which can pose issues for those with egg allergies. However, there are now several egg-free options available, such as cell-based and recombinant flu vaccines. Recombinant Vaccines (e.g., Flublok Quadrivalent): These are produced without the use of eggs and are grown in insect cells, making them a suitable option for individuals with egg allergies. Cell-Based Vaccines (e.g., Flucelvax Quadrivalent): These vaccines are also egg-free and are produced using mammalian cell cultures, which can be a safer alternative for those with egg allergies. Other Considerations: If you have had a reaction to a specific component of the flu vaccine (e.g., gelatin, preservatives, or antibiotics), discussing your medical history with a healthcare provider is crucial. They can help identify vaccines that exclude these ingredients. It's important to consult with an allergist or healthcare provider to determine the safest option based on your specific allergies and medical history. They can also provide guidance on pre-vaccination testing or desensitization protocols if necessary. Also, at @trents mentioned, could you be getting hidden gluten in your diet? Do you eat in restaurants? If so, this could be why you still have high gluten antibodies.
×
×
  • Create New...