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

Not Sure What To Do

CarolynV

Recommended Posts

CarolynV Newbie
CarolynV
Posted

Hi,

I just found this forum and am so glad.

I tested positive for celiac disease last Thursday after almost 4 months of strange neuological symtoms. My neurologist did every sort of neuological test he could think of and found nothing so he referred me to a very well respected rheumatologist in my area. The rheumatologist is the one who found me positive. I was shocked because I never had considered having celiac and asked her if that was the reason for all my weird symptoms (immense fatigue, muscle pain and twitching). She said that celiac could absolutely cause all my symptoms. The problem is, when I started researching celiac, it said that needed to be on a regular diet in order for the results to be accurate. About a month ago, I had started a gluten free diet which was recommended by a friend. I actually called my GP and my neurologist and asked if it was OK to do this and they both said it wouldn't hurt me. My rheumatologist knew that I was on this diet when she tested me, so she did a complete celiac panel on me. So, the positive result came back in the IgG Antiliadin which I've now found on the internet is not very specific. My IgA results were negative (which is more definitive). So, I'm not quite sure what to do. The rheumatologist was so convinced on Thursday that I had celiac disease that she said she didn't even need to see me again. She said that I just needed to stay on the diet that I'm already on. I do know that I will place a call in to her tomorrow, but I just wanted to know what you all thought. I've also read on line that a positive result for celiac disease is not only a blood test, but a biopsy. Have any of you done both? Also, have any of you seen a nutritionist?

Thanks for any thought that you have on the matter. If this is what I have, I actually consider myself lucky, since I was tested for so many other worse things.

CarolynV

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

Celiac.com Sponsor (A8-M):


elye Community Regular
elye
Posted

Hi, Carolyn!

You've come to the right place. Lots of knowledge and support to be found here!

I had both the blood panel and the biopsy done. If there are questions about you blood results, the biopsy may confirm celiac. However, like the blood panel, the biopsy can only rule the disease IN...it cannot rule it OUT. The GI may not see any damage, and the biopsy samples may not show any, either, but since you have 22 feet of lower intestine, areas can easily be missed.

The only truly accurate diagnostic tool for this illness is dietary response. Sounds like you may have your answer just from this.

Welcome to the board, and good luck! :)

aeshlea Apprentice
aeshlea
Posted

I would stay on the diet if I were you. It won't hurt, and you will know for sure as soon as you accidentally eat gluten, or do a challenge. Like the above poster said, a positive result from the dietary changes is really the true indication of what your body is trying to tell you. I have not seen a nutritionist because after I read up on what I could and could not eat, it was fairly easy. Not easy at first finding the things I could eat, but you get use to reading labels and before you know it you will be a pro at scanning for gluten ingredients. If seeing a nutritionist would make you feel better though, go for it.

Archived

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

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


  • Member Statistics

    • Total Members
      127,861
    • Most Online (within 30 mins)
      7,748
    Farca
    Newest Member
    Farca
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Opinions on my test results/symptoms

      By Scott Adams · Posted

      Villi damage is caused by celiac disease, which does not happen in NCGS, although some people with NCGS do have elevated antibody levels. Some people with NCGS who have the genes for celiac disease may end up developing celiac disease, so in some people NCGS may be a precursor to celiac disease, but more research needs to be done on NCGS. Both low iron and vitamin D are common symptoms of celiac disease. Also, regarding beer:  
    • Scott Adams
      Vaccines

      By Scott Adams · Posted

      It’s true that some vaccines contain small amounts of preservatives, stabilizers, or adjuvants to ensure their safety and effectiveness. For example: Thimerosal: A preservative that contains ethylmercury (not to be confused with methylmercury, which is toxic). Most routine vaccines no longer contain thimerosal, except for some flu vaccines in multi-dose vials. Aluminum: Used in very small amounts as an adjuvant to boost the immune response. The amount is far below levels considered harmful, but if you suspect an aluminum allergy, it’s worth discussing with your doctor. Sugar alcohols: These are sometimes used as stabilizers, but they are generally well-tolerated. If you have a known intolerance, you can ask about specific ingredients in each vaccine. Since you mentioned an intolerance to metals and jewelry, it’s a good idea to follow up with allergy testing, as you planned. This can help identify specific metals (e.g., nickel, aluminum) to avoid. Your doctor can then guide you on whether any vaccine ingredients might be a concern. Since the Mayo Clinic has already identified potential allergies, it might be helpful to consult an allergist or immunologist. They can review your medical history, perform tests, and provide personalized advice on vaccines and their ingredients. While it’s important to address your intolerances, it’s also worth considering the risks of not being vaccinated. Many vaccine-preventable diseases can have serious consequences, especially for those with underlying health conditions. 
    • 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.  
×
×
  • Create New...