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

Low Positive?

bbopper

Recommended Posts

bbopper Newbie
bbopper
Posted

Hi, My 21 one year old son just had a blood test for celiac and it came back as "low positive". Does this mean he has celiac or possibly not? For a couple years now he's had problems with diahrea and stomach cramping but suffers from anxiety so the drs and us always attributed it to that. Recently his bouts with diahrea/cramping have gotten worse and more frequent thus having the dr. test for celiac.

Thanks for any help/advice you can offer!

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

Celiac.com Sponsor (A8-M):


confused Community Regular
confused
Posted

A low postive is still postive, its like being pg, either you are or you not lol. Do you know the test that they ran and which one was the low postive, that would help to know.

paula

TrillumHunter Enthusiast
TrillumHunter
Posted

Second that. It's a yes or no test. Folks who have low positive numbers are no less celiac than folks with high numbers.

I actually took my high negative daughter off gluten and she's doing FANTASTIC!

Lisa Mentor
Lisa
Posted

Welcome to this wonderful site for information.

I just wanted to add the his anxiety may be caused by celiac. Anxiety is is one of the common symptoms as well as depression and fatigue.

bbopper Newbie
bbopper
Posted
  • Author

Oh my gosh. He has suffered from depression also for several years and is ALWAYS so tired, more so lately. He also has developed cold sweats at night. Is that another symptom?

We couldn't get him an appointment with a GI dr. until the 22nd. I wonder if we should stop all wheat or wait until then so the dr. can see or do further tests while he's eating it.

Can anyone recommend somewhere that has a list or a book of specific foods that can be purchased in regular food stores? We did a quick trip to the food store last night for New Years Eve and I was directed to the natural foods aisle.

This is a wonderful site!

Thank you!

Lisa Mentor
Lisa
Posted

Beth,

If you are going to pursue testing, do not have him begin the gluten free diet. Your GI should suggest and endoscopy exam, that will look into the small intestines (area effected by Celiac Disease) to see if there is any damage and take multiple biopsies. A biopsy can confirm Celiac, but it is not 100% reliable as the biopsy can be hit or miss.

After testing, a simple diet is best in the beginning. Meats, Seafood, Rice, Potatoes, Fresh Veggie and Fruit. Once familiar with what to look for (wheat, malt, rye, barley) you can add additional foods. Don't rush out and buy expensive processed gluten free foods. He won't like them in the beginning, although GREAT inroads have been made in taste and texture in the recent years.

There are listings of gluten free products, but ingredients change frequently and their gluten free status may be in jeopardy. Those lists are great in the beginning, but should not be relied upon for any extent of time.

Here is a list of Companies who are wonderful about listing gluten by name and easily read on their ingredient listing, as in (wheat, malt, barley, rye):

Open Original Shared Link

georgie Enthusiast
georgie
Posted

OMG - I was tested 18 months ago and came back as a high negative result. Dr said I was only Gluten Intolerant and I did the gluten-free diet and know I can never eat Gluten again. Small trace amounts gluten me terribly. But I have never had a 'scope or biopsy. So now .... I will never know - will I ? Does this mean I was probably Celiac all along and my GP should have known that and referred me to a Gastro Dr ?

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted
OMG - I was tested 18 months ago and came back as a high negative result. Dr said I was only Gluten Intolerant and I did the gluten-free diet and know I can never eat Gluten again. Small trace amounts gluten me terribly. But I have never had a 'scope or biopsy. So now .... I will never know - will I ? Does this mean I was probably Celiac all along and my GP should have known that and referred me to a Gastro Dr ?

You actually have a real smart doctor. There are many who think that GI is simply celiac that has not totally destroyed your digestive system yet. If you have had a positive response to the diet that is diagnostic in itself. Your doctor went with the most valuable test there is, your response to the diet. You have your answer and don't need to look furthur. A GI doctor would want you back on a full gluten diet for at least a couple of months to check for villi damage. If that thought sends shudders through you listen to your gut and just stay gluten-free and keep healing.

Archived

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

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


  • Member Statistics

    • Total Members
      127,860
    • Most Online (within 30 mins)
      7,748
    PCM
    Newest Member
    PCM
    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...