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

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

  • 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. trents
      - trents replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Ibuprofen

      Yes, some people do get withdrawal from gluten but gluten withdrawal doesn't usually cause gut pain. Maybe more like general body aches and discomfort. We have articles on gluten withdrawal on this forum. You might do a search for them. Applesauce is very acidic and some brands have added vitamin C (ascorbic acid) which makes them more acidic. This can...
    2. Colleen H
      - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Ibuprofen

      Do you or anyone know alot about ibuprofen I wasn't sure if I was eating too much apple sauce. Something is making my pain so much worse I'm referring to the intense pins and needles in my feet and lower legs. Jaw actually has tardive dystonia and muscle spasms throughout my back Almost like an opposite effect that a pain reliever...
    3. Colleen H
      - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Ibuprofen

    4. Colleen H
      - Colleen H posted a topic in Coping with Celiac Disease
      0

      Oh my goodness medication causing pain !!!!

      I think I found a huge culprit for severe reactions to create worsening of my c symptoms. Do people with celiac have sensitivity and /or have opposite reaction to certain medications Where can I find a list ? I'm new here I'm.wondering why I am getting worse when I take certain medicine...the burning feet. Rebound muscle pain so intense ...
    5. Colleen H
      - Colleen H replied to Colleen H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Stomach burning and neuropathy

      Does anyone know if that includes scrambled eggs and healthy smart butter (,gluten free) I add a very tiny amount of margarine less than a teaspoon. I did no't have any bread It just seems like no matter what I eat my stomach and nerves over fire and here comes a host of horrible symptoms. My lower abdomen feels horrible, my right...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,848
    • Most Online (within 30 mins)
      7,748
    Francis M
    Newest Member
    Francis M
    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

    • trents
      Ibuprofen

      By trents · Posted

      Yes, some people do get withdrawal from gluten but gluten withdrawal doesn't usually cause gut pain. Maybe more like general body aches and discomfort. We have articles on gluten withdrawal on this forum. You might do a search for them. Applesauce is very acidic and some brands have added vitamin C (ascorbic acid) which makes them more acidic. This can damage the stomach lining if you eat it too often. Especially if your stomach lining is already compromised. Ibuprofen inhibits the body's ability to rebuild the stomach's protective mucosal lining. That's why it can cause peptic ulcers. As strange as it may sound, low level irritation/inflammation stimulates the body to rebuild the stomach lining. There are two steps in this rebuilding process known as COX 1 and COX 2. Ibuprofen represses both COX 1 and COX 2. Celecoxcib, a prescription anti inflammatory, inhibits only COX 2, making it less likely to cause damage to the gut lining.
    • Colleen H
      Ibuprofen

      By Colleen H · Posted

      Do you or anyone know alot about ibuprofen  I wasn't sure if I was eating too much apple sauce.   Something is making my pain so much worse  I'm referring to the intense pins and needles in my feet and lower legs.  Jaw actually has tardive dystonia and muscle spasms throughout my back Almost like an opposite effect that a pain reliever would do. I'm fairly new to this. Whatever is going on seems to be worsening  Do people get a withdrawal effect from gluten?  It's extremely painful 😖  I'll post that question or research on the site  Thank you everyone for responding 
    • Colleen H
      Ibuprofen

      By Colleen H · Posted

    • Colleen H
      Oh my goodness medication causing pain !!!!

      By Colleen H · Posted

      I think I found a huge culprit for severe reactions to create worsening of my c symptoms. Do people with celiac have sensitivity and /or have opposite reaction to certain medications Where can I find a list ?  I'm new here I'm.wondering why I am getting worse when I take certain medicine...the burning feet.  Rebound muscle pain so intense  How many people get opposite effects or have a horrible attack after these meds
    • Colleen H
      Stomach burning and neuropathy

      By Colleen H · Posted

      Does anyone know if that includes scrambled eggs and healthy smart butter (,gluten free) I add a very tiny amount of margarine less than a teaspoon.  I did no't have any bread    It just seems like no matter what I eat my stomach and nerves over fire and here comes a host of horrible symptoms. My lower abdomen feels horrible, my right leg thigh muscle.. very odd. Jaw pain. Burning feet , joint pain , you name it  The anxiety just creeps up into brain fog. I don't think I could explain this to anyone who is unfamiliar.  Also,  I most likely will not remember posting this until I check it.  This is highly unusual for me because I have an excellent memory.  One weekend before I knew anything about celiac I lost an entire weekend from severe brain fog, confusion, pain, etc.  I honestly thought I was losing my mind. When I think back I recall eating a lot of PBJ sandwiches and turkey sandwiches.  Once again did not know about gluten.  I was just too sick to cook. Do people fast during attacks ?? It seems horrible to keep going through this. I hope I'm not causing my own problems... I wonder if I should fast because I'm not eating gluten .  Chicken ,  scrambled eggs no milk , canned carrots,  gluten free low sugar low fat Greek yogurt which I already posted about 😞 Any suggestions I am open... I am bedridden when this happens to me.  Thank you Celiac community. 🙏🏻❤️      
×
×
  • 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.