Jump to content

  • 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):

Need Help Figuring This Out

Bbec

Recommended Posts

Bbec Newbie
Bbec
Posted

Hi, I am brand new here and hoping that some of you might be able to help me out with what to do. So my backstory. I've never had any troubles with food growing up. I've always been slightly underweight, but so is my grandmother and I look a lot like her.

In October, I was training for a half marathon and after a ten mile run, I was just wiped out like never before and my stomach didn't feel right. Not uncommon for a long run, but it felt different. And it never went back to normal. I had days where I felt totally fine, I had days where I felt just bloated, gassy, and like my digestive system wasn't working right, and then I also had a few days that I was stuck on the couch all day, utterly exhausted with no appetite.

I had a bunch of blood draws, stool sample testing, and an X-ray of my belly. No diagnosis. I saw a chiropractor and got more X-rays with no diagnosis. I asked to be tested for celiac and the blood draw came back negative. I had finally decided that it was all just stress and was about to go in and ask about anti anxiety meds, but I decided to first try an elimination diet. I'm currently on day three of cutting gluten and dairy (mostly successful except a few very sneaky things). I'm an emotional wreck, thinking about all the possibilities and the very real idea that I may never eat those foods again or be able to eat out with friends in our small town.

I have two young boys and I'm not sure if I sold force them into a gluten-free diet or even if I should be trying that yet without a diagnosis.

Any help would be greatly appreciated and maybe get me to stop crying.

Update: here are the test results.

Immunoglobulin A, S 172. Ref range: 61-356 mg/dL

I have no idea what this means.

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

Welcome!

First I would like to ask if you were tested adequately/ properly? This is the full panel for Celiac Disease:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

If you do not have your test results, get them from your doctor and post them here. That's a start.

Celiac often requires a trigger and the stress of competition could be likely. It could be possible that you may have Non Celiac-Gluten Intolerance. There is not current test for that, other than perhaps a positive dietary response. Do you have a family history of digestive issues or other things?

And should you, in fact, have Celiac Disease....it's far better than any alternative that I can think of. :) A resolve through diet change. I have been doing it for eight years and I do not feel deprived in any manner. But it is an adjustment initially. That we can help you with. ;)

No need to bother you boys until you know what you're dealing with.

Hang in there and try to get some answers. You've found a great place.

Bbec Newbie
Bbec
Posted
  • Author

Thank you. I will call my clinic tomorrow and figure out what they tested. In the meantime, should I be avoiding gluten or should I try keeping it in my diet in case there is need for more testing. I have been attempting to keep gluten and dairy out of my diet for three days now.

mushroom Proficient
mushroom
Posted

Thank you. I will call my clinic tomorrow and figure out what they tested. In the meantime, should I be avoiding gluten or should I try keeping it in my diet in case there is need for more testing. I have been attempting to keep gluten and dairy out of my diet for three days now.

Yes, you should keep gluten in your diet until you are certain that all testing is completed.

Lisa Mentor
Lisa
Posted

Thank you. I will call my clinic tomorrow and figure out what they tested. In the meantime, should I be avoiding gluten or should I try keeping it in my diet in case there is need for more testing. I have been attempting to keep gluten and dairy out of my diet for three days now.

Yup, as Mushroon said...stay on a full gluten diet as much as possible (or at least a piece of toast a day), in order to test as accurate as possible.

Bbec Newbie
Bbec
Posted
  • Author

Updated post with test results. Immunoglobulin A, S value 172

frieze Community Regular
frieze
Posted

Updated post with test results. Immunoglobulin A, S value 172

This is basically useless, on its own. If this represents "total" IgA, it is normal. But where are the celiac tests?

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

Celiac.com Sponsor (A8-M):


Bbec Newbie
Bbec
Posted
  • Author

This is basically useless, on its own. If this represents "total" IgA, it is normal. But where are the celiac tests?

I don't know. Apparently that's all that was tested. The notes say that celiac is unlikely but that 10% of people will show a false negative. It says "if celiac is highly clinically suspected, consider HLA-DQ typing." Thanks mayo clinic?

mushroom Proficient
mushroom
Posted

I believe you need to go to the office and demand that they give you a copy of the results they got back from the lab. There must be more than that. What about the list in Lisa's post #2??

Bbec Newbie
Bbec
Posted
  • Author

I believe you need to go to the office and demand that they give you a copy of the results they got back from the lab. There must be more than that. What about the list in Lisa's post #2??

That is exactly what I have. It is the lab results sent to my clinic from Mayo clinic where the test was completed. The quote I put in #8 is what was written in the comments section on the results.

GFinDC Veteran
GFinDC
Posted

Hi,

I suggest you keep on the regular gluteney diet for now. Your test results are not completed, perhaps they didn't do them all or they just didn't give you all the information. IF you do need to go gluten-free, don't be too concerned about it. The biggest challenge is usually just getting started and learning how to eat right. People learn new things all the time and that is just one more thing to learn. There are lots of gluten-free alternatives available now for most an food you can think of. And the gluten-free diet is healthy diet for people to follow anyway.

1desperateladysaved Proficient
1desperateladysaved
Posted

Sometimes when they take blood they store extra incase you decide to do other tests. Check with the lab.

Diana

mushroom Proficient
mushroom
Posted

What we were looking for is the actual results relating to celiac, not the comments. :)

Bbec Newbie
Bbec
Posted
  • Author

What we were looking for is the actual results relating to celiac, not the comments. :)

That's all there was. The 172, the reference range, and the comments.

mushroom Proficient
mushroom
Posted

Tthese tests that Lisa posted are what you need:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

It would appear that they did only the last one.

Bbec Newbie
Bbec
Posted
  • Author

My doctor finally returned my call and I told him all these values that my test should have yielded. He said he would talk to the pathologist about it. Did everyone have these initial tests done by their reg doctor or a gastroenterologist? I'm wondering if I. Should just ask for a referral to one.

Archived

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

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

  • Member Statistics

    • Total Members
      134,084
    • Most Online (within 30 mins)
      10,442
    Melvac
    Newest Member
    Melvac
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...