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

A slippery slope

Emilia
 Share

Recommended Posts

Emilia Newbie
Emilia
Posted

I’m new to this forum and I need all the help I can get because, as often seems to happen with celiac, my doctor downplays it massively.

I am 17 years old and have always struggled with diarrhoea, stomach aches that vary in intensity, bloating, heartburn etc etc. as well as vitamin D and calcium deficiency, low weight and so on. I got a 23andme DNA test for Christmas and found that I have the gene HLADQ2.5 gene and since I know my mother and grandfather have both suffered from the same issues as I do I thought I should get tested. I ate lots of gluten-filled foods in the week preceding the test and my stomach issues got worse and I ended up getting a terrible cold and feeling extremely tired. I got the blood test back online and I was gutted: my ttg Iga was only 0.3 and my total IGA was 2.3, completely within the normal range. I felt cheated as my doctor has just scribbled a note underneath: no further action necessary. 

I wondered if perhaps I was kidding myself and I don’t have celiac disease. Is it possible with the negative blood tests I still could have it?

Recently I have been eating raw vital wheat gluten flour to see what effect it has on me. I eat it with a spoon having stirred it in water every morning. I have experienced some serious bloating and constipation, fatigue and stomach aches but in a way I hope that it could somehow cause me to get celiac disease because that’s all I want my problem to be instead of something else more sinister. From my research, however, amount of gluten doesn’t seem to affect risk of celiac being triggered.

I am desperate for some advice or help on the matter as well as others who have experienced the same feelings as I have but have come out the other side. 

E 

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted
19 minutes ago, Emilia said:

I’m new to this forum and I need all the help I can get because, as often seems to happen with celiac, my doctor downplays it massively.

I am 17 years old and have always struggled with diarrhoea, stomach aches that vary in intensity, bloating, heartburn etc etc. as well as vitamin D and calcium deficiency, low weight and so on. I got a 23andme DNA test for Christmas and found that I have the gene HLADQ2.5 gene and since I know my mother and grandfather have both suffered from the same issues as I do I thought I should get tested. I ate lots of gluten-filled foods in the week preceding the test and my stomach issues got worse and I ended up getting a terrible cold and feeling extremely tired. I got the blood test back online and I was gutted: my ttg Iga was only 0.3 and my total IGA was 2.3, completely within the normal range. I felt cheated as my doctor has just scribbled a note underneath: no further action necessary. 

I wondered if perhaps I was kidding myself and I don’t have celiac disease. Is it possible with the negative blood tests I still could have it?

Recently I have been eating raw vital wheat gluten flour to see what effect it has on me. I eat it with a spoon having stirred it in water every morning. I have experienced some serious bloating and constipation, fatigue and stomach aches but in a way I hope that it could somehow cause me to get celiac disease because that’s all I want my problem to be instead of something else more sinister. From my research, however, amount of gluten doesn’t seem to affect risk of celiac being triggered.

I am desperate for some advice or help on the matter as well as others who have experienced the same feelings as I have but have come out the other side. 

E 

Were you eating gluten free and then before the week you ate gluten?  If so, that would not be enough gluten for an accurate test.

even if you don't have celiac, there is something going on.  You and your parents need to insist that a doctor addresses it.  There are lots of things it could be, many not sinister.  FODMAP issues are quite common and have all the stomach issues you have described.  

Ennis-TX Grand Master
Ennis-TX
Posted

We have had a few members test negative on the blood test but show positive on the biopsy. Keep eating it and push for a Endoscope with biopsy and perhaps a Colonoscopy. If both of these are negative you obviously are at least NCGS which is a condition we have members with and is still serious requiring a gluten free diet although not widely recognized by doctors.

Reason I suggest both scopes is other gastro issues like Ulcerative Colitis, Crohns, etc. Can have a gluten trigger in some people and ruling out everything and trying to find you a answer to your obvious issues is the goal.

GFinDC Veteran
GFinDC
Posted

Hi Emilia,

You need to eat gluten every day for 3 to 4 weeks before the endoscopy, and every day for 12 weeks before the blood tests.

Your symptoms do sound like they could be caused by celiac disease, but they could be caused by another food intolerance issue too.  If you look at people's signatures under their posts you'll often see multiple food intolerances listed beyond just gluten.  There are also food allergies which can cause symptoms.

This link lists some common food allergens, but there are more than that.

https://acaai.org/allergies/types/food-allergy

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
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. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet official, the Health Director of...
    2. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac...
    3. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together. Our bodies can make Taurine from meats consumed. Our bodies cannot make Thiamine and must consume thiamine from food. Meat is the best source of B vitamins like Thiamine. Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine...
    4. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      @Jmartes71, I went to Doterra's site and had a look around. The Doterra TerraZyme supplement really jumped out at me. Since we, as Celiacs, often have digestive problems, I looked at the ingredients. The majority of the enzymes in this supplement are made using black mold, Aspergillus! Other enzymes are made by yeast Saccharomyces! Considering...
    5. Scott Adams
      - Scott Adams commented on Scott Adams's article in Additional Concerns
      2

      Gluten Transfer from Biodegradable Tableware: What a New Study Found and Why It Matters (+Video)

      Thanks for mentioning this, and here is an older article on the topic:
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,543
    • Most Online (within 30 mins)
      7,748
    Jeanette K.
    Newest Member
    Jeanette K.
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      Are Lindt chocolate balls gluten free?

      By RUKen · Posted

      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
×
×
  • 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.