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'm Back With More Questions, Please

bnsnewman

Recommended Posts

bnsnewman Rookie
bnsnewman
Posted

My daughter has not technically tested positive for Celiac, but she did test positive for gluten sensitivity (as well as casein sensitivity), and she has two positive genes for gluten sensitivity. In trying to explain all of this to both sides of the family, as well as friends and teachers, what is the best way to explain this?

Please tell me if I am wrong, but I thought that the difference between Celiac and having a sensitivity to gluten is the intestinal damage? That Celiac will cause intestinal damage but that a sensitivity will not necessarily cause damage? Though she sure does get sick from consuming gluten.

My sister printed out the list of Celiac safe foods and not safe foods from this site, and when I showed it to another family member over the weekend, she said that the list was for Celiac and not gluten sensitivity. Ok, true. Can and should people with gluten sensitivity follow the same guidelines as people with Celiac?

And we are having our daughter allergy tested for gluten and casein. As it stands right now, her docs don't accept the Enterolab results stating she is gluten sensitive. Though I have so much info in my head, that I'm not even sure what the difference between an allergy and a sensitivity is anymore.

Thanks again. Natalie

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted
My daughter has not technically tested positive for Celiac, but she did test positive for gluten sensitivity (as well as casein sensitivity), and she has two positive genes for gluten sensitivity. In trying to explain all of this to both sides of the family, as well as friends and teachers, what is the best way to explain this?

Please tell me if I am wrong, but I thought that the difference between Celiac and having a sensitivity to gluten is the intestinal damage? That Celiac will cause intestinal damage but that a sensitivity will not necessarily cause damage? Though she sure does get sick from consuming gluten.

My sister printed out the list of Celiac safe foods and not safe foods from this site, and when I showed it to another family member over the weekend, she said that the list was for Celiac and not gluten sensitivity. Ok, true. Can and should people with gluten sensitivity follow the same guidelines as people with Celiac?

And we are having our daughter allergy tested for gluten and casein. As it stands right now, her docs don't accept the Enterolab results stating she is gluten sensitive. Though I have so much info in my head, that I'm not even sure what the difference between an allergy and a sensitivity is anymore.

Thanks again. Natalie

Whether diagnosed with Celiac or gluten sensitivity, the diet is the same. You are correct, with Celiac if you ingest gluten you will have intestinal damage, with a sensitivity you can have the very same symptoms without intestinal damage. It is often confusing to learn or explain.

Ursa Major Collaborator
Ursa Major
Posted

Natalie, it is very unlikely that your daughter's allergy tests for gluten and casein will show anything (even though it is possible). Intolerances will not show up on allergy testing.

In people who have a gluten intolerance/sensitivity without intestinal damage will get damage elsewhere, like neurological damage, and mental health issues because the gluten attacks the brain more than the gut. It is just as serious as celiac disease, and the same diet guidelines apply to both.

People with your daughter's genes are frequently misdiagnosed with MS (because the gluten can cause lesions in the brain, and cause the same symptoms as MS), depression, schizophrenia, and others. Also, she could end up with gluten ataxia, neuropathies, crippling joint pain, cancer, vision problems and a host of other impairments.

You need to take this very seriously, no matter what your doctor thinks of Enterolab. You know that your daughter can't tolerate gluten, and that those results were accurate. Take a firm stand with your family, and tell them that you are responsible for your daughter's welfare, and she is not to have any gluten under any circumstances.

Karen B. Explorer
Karen B.
Posted
----snip---

And we are having our daughter allergy tested for gluten and casein. As it stands right now, her docs don't accept the Enterolab results stating she is gluten sensitive. Though I have so much info in my head, that I'm not even sure what the difference between an allergy and a sensitivity is anymore.

Thanks again. Natalie

Natalie, it sounds a second opinion might be a good idea. Some docs still aren't up to date on all the symptoms and effects of Celiac.

Archived

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

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


  • Member Statistics

    • Total Members
      127,858
    • Most Online (within 30 mins)
      7,748
    Terin83
    Newest Member
    Terin83
    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
      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.  
    • 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.
×
×
  • Create New...