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

I Think I Might Have Celiac. The Doctor Didn't Give Me The Test I Wanted.

milly85

Recommended Posts

milly85 Newbie
milly85
Posted

This is a extremely embarrassing for me, it has taken me ages to see a doctor, so I hope people here are understanding. I have been going through a very embarrassing stomach problem since I was very young. I have only recently gone to the doctors about it because it is getting unbearably embarrassing and also very uncomfortable. My problem is, wind and constipation.

About two months ago I was feeling weak I decided to go to accidents and emergency. They took blood tests and did an abdominal scan only to find I was constipated as well as impacted. That provied I wasn

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

If a doctor defined diagnosis is not something you feel you need you could simply try the diet strictly for a bit and see if it helps. It would be a good idea to also avoid dairy at first as you may not be able to digest it well until you heal. You could also go with Enterolab testing for antibodies as a part of the diagostic process, they can be ordered on line, and you can be gluten free when you do the tests as long as it isn't too long after you stop the gluten.

milly85 Newbie
milly85
Posted
  • Author
If a doctor defined diagnosis is not something you feel you need you could simply try the diet strictly for a bit and see if it helps. It would be a good idea to also avoid dairy at first as you may not be able to digest it well until you heal. You could also go with Enterolab testing for antibodies as a part of the diagostic process, they can be ordered on line, and you can be gluten free when you do the tests as long as it isn't too long after you stop the gluten.

I don't mind trying. It's just I don't know where to start. Most of the foods I eat contain wheat anyway. I am trying to best to avoid milk, it helps hugely. I feel better but my symtoms are not gone. I do have an appointment coming up in the gastrocolotomy department and I was wondering if these are the people to speak to and ask about the celiac test or the antibodies test. Or should I ask my doctor. My appointment is on the 9th of November by the way. Shall I continue eating gluten for now?

ravenwoodglass Mentor
ravenwoodglass
Posted
I don't mind trying. It's just I don't know where to start. Most of the foods I eat contain wheat anyway. I am trying to best to avoid milk, it helps hugely. I feel better but my symtoms are not gone. I do have an appointment coming up in the gastrocolotomy department and I was wondering if these are the people to speak to and ask about the celiac test or the antibodies test. Or should I ask my doctor. My appointment is on the 9th of November by the way. Shall I continue eating gluten for now?

Yes continue eating gluten until you are done with all testing. The GI doctors are the people to speak to about testing. They will do blood testing and possibly an endoscopy. You may want to call the office and speak to a nurse now and ask if the doctor can order a full celiac panel for you. Tell them you strongly suspect that this is the problem and that you have been diagnosed with anemia. Anemia is something that is often found in us. That way they will have the report from the blood work the day of your appointment.

milly85 Newbie
milly85
Posted
  • Author
Yes continue eating gluten until you are done with all testing. The GI doctors are the people to speak to about testing. They will do blood testing and possibly an endoscopy. You may want to call the office and speak to a nurse now and ask if the doctor can order a full celiac panel for you. Tell them you strongly suspect that this is the problem and that you have been diagnosed with anemia. Anemia is something that is often found in us. That way they will have the report from the blood work the day of your appointment.

The blood results are kept on the system so I know they'd have access to it since they were done in the same hospital. But I am going to collect another copy from my doctor just to see what it says. But November 9 is a long time to wait. And then I'd have to wait an extra few months for an endoscopy as well. NHS is good, but the waiting list is very long. I might have to go private. I'm not sure if the animia is actually related to my stomouch, I recently had two to three urine samples checked over the past four months because I keep getting UTIs, and it showed I was bleeding from there (I couldn't see the blood though).

Thank you for answering my questions ravenwoodglass.

mushroom Proficient
mushroom
Posted

UTI's seem to be more common and frequent in celiacs, and microscopic blood is a common feature of a UTI.

I do think it would be a good idea to get a copy of your results and post them and the normal ranges on here so we can see what they actually tested.

milly85 Newbie
milly85
Posted
  • Author

Hi mushroom, thank you for answering my question. I just went to collect my blood test results, and it says a huge load of things. But the main one from which they said I had folic acid deficiency animia is this:

Red blood cell folate 198 ng/mL Low

I don't know how to interpret these results. All I can say is that my anemia is probably not so bad, it doesn't prevent me from doing my usual things.

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted
Hi mushroom, thank you for answering my question. I just went to collect my blood test results, and it says a huge load of things. But the main one from which they said I had folic acid deficiency animia is this:

Red blood cell folate 198 ng/mL Low

I don't know how to interpret these results. All I can say is that my anemia is probably not so bad, it doesn't prevent me from doing my usual things.

I was thinking more along the lines of what other tests they did, Milly. Whether there was anything like IGA, EMA, or IGg, any of the celiac tests. If you have not had any of these done, you should have them toute suite. Did they test Vitamin D level, B12, etc?

milly85 Newbie
milly85
Posted
  • Author
I was thinking more along the lines of what other tests they did, Milly. Whether there was anything like IGA, EMA, or IGg, any of the celiac tests. If you have not had any of these done, you should have them toute suite. Did they test Vitamin D level, B12, etc?

Sorry, yes. It says B12 but that seems normal. (Serum vitamin B12 260pg/ml)

I can't see anything like IGA or EMA or IGG on the results.

ravenwoodglass Mentor
ravenwoodglass
Posted
Sorry, yes. It says B12 but that seems normal. (Serum vitamin B12 260pg/ml)

I can't see anything like IGA or EMA or IGG on the results.

260 is barely over the lower 'normal' lower limit for B12. It is very common for celiacs to be low in B12 because the area damaged by celiac helps us absorb it from our food or supplements. Have you had other B12 tests run before? I would be willing to bet that they show a steady drop over time. I could of course be wrong about that. When you are done testing you should definately give the diet a good try and it wouldn't be a bad idea to get some sublingual B12 to supplement with for a while.

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

      Hidden Gluten in distilled vinegar

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

      Hidden Gluten in distilled vinegar

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

      Opinions on my test results/symptoms

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

      Vaccines

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

      Vaccines

      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...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,855
    • Most Online (within 30 mins)
      7,748
    Tuba1971
    Newest Member
    Tuba1971
    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
      Hidden Gluten in distilled vinegar

      By knitty kitty · Posted

      @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
      Hidden Gluten in distilled vinegar

      By Manaan2 · Posted

      @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
      Opinions on my test results/symptoms

      By BIg Nodge · Posted

      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
      Vaccines

      By Dawn Meyers · Posted

      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
      Vaccines

      By Scott Adams · Posted

      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...