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

Test Results Positive.... But....

jo-marnes

Recommended Posts

jo-marnes Rookie
jo-marnes
Posted

Hi everyone,

Yesterday my Dr told me I have celiac disease. I was tested for food allergies as on 3 occasions over the past year I have had some awful stomach pains.... I wasn't expecting results to show anything. I feel that my issues are more related to fatty foods more than wheat.... anyway...

My results for Tissue Transglutaminase IgA and IgG were high. I can't remember which way round they were (Mum's a nurse and taken results to work to ask someone), but one was 69 and in the 'high positive' reference range and the other was >800, where 'normal' was considered to be <20! In fact, their reference range only went up to >80! So, these clearly are high results and indicate celiac according to my printout. However, wouldn't someone with such high results have real bad symptoms? I dont. I have eaten gluten all my life (I'm now 26) and never had issues before. I don't have loose stools, no vomiting, no malnutrition, no trouble keeping weight on etc. The only issues are that I've had these episodes of pain (last about 4 days) which I can't really pin point on anything.

My sister has been diagnosed with IBS and now I'm concerned that I'm doing myself damage without knowing. And what about my kids - should they be tested? My Doctor just told me to go gluten free.... not even mentioned a biopsy or anything. What should I be thinking?

Thanks!

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

Celiac.com Sponsor (A8-M):


starrytrekchic Apprentice
starrytrekchic
Posted

You're definitely celiac. Some celiacs are 'silent celiacs' with no outward symptoms, so you're lucky you had enough that you got tested. You may find you have a host of symptoms you don't associate with celiac that will resolve going gluten free. Symptoms can present in a lot of ways (migraines, ataxia, lack of concentration, hypoglycemia, anemia, depression, etc.)

The problem with fatty foods is that your intestines can't absorb them anymore (fat malabsorption.) After your intestines start to heal, this should go away.

You don't have to have a biopsy. It can be useful to see the extent of the damage of your intestines and as a comparison later, if you feel you're not getting better gluten free.

Make sure your sister is tested for celiac. It's genetic, and a LOT of people on this forum were initially misdiagnosed as having IBS. You may want to have your children screened for it.

ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome to the board. Yea you are pretty firmly diagnosed with those results. Do encourage everyone in your family to be tested. Celiac can have different presentations for different people. My DD had stomach pain, severe, as her main symptom and also fatigue. My DS was growth stunted, had stomach pain and mood issues. How it hit me is in my signature. While it is a diagnosis that can take some getting used to it is good that you have been diagnosed before the autoimmune process hit with enough force to severely impact other organs like your thyroid, gallbladder or brain. Your in a good place to learn what you need to do to keep yourself safe and get a bit of support while you do so. Ask whatever questions you need to.

jo-marnes Rookie
jo-marnes
Posted
  • Author

Thanks for the replies....

I guess what I'm really wondering, is that given my lack of symptoms, does it matter? Do I have to be gluten free?? If it only makes me symptomatic a handful of times, is it worth the whole gluten free headache??! And to what extent do you have to be gluten free? Only a handful of products in my pantry are gluten free.... can you eat gluten in small amounts? I.e. if the packet says 'May contain gluten'

I've been back to the GP who has now referred me for a biopsy (think I need pursuading that this is a reality) and I will ask the specialist about screening the kids. I'm thinking there is a good chance my youngest has it (he's almost 3) as he is very skinny and small for his age.... not gained much weight in the last year or so. He often has loose stools, although doesn't complain of pain or anything much.

My Sister is getting her bloodwork done today so will learn next week....

ravenwoodglass Mentor
ravenwoodglass
Posted

I'm sorry but you really need to be strict with the diet. There are some who have no symptoms at all but they still need to be strict with the diet. You do have episodes of stomach pain, that is a symptom. There may also be other things that you don't realize are associated with celiac going on. You run the risk of developing other autoimmune disorders and even cancers if you continue to consume gluten. You don't want to look back in ten years after having your thyroid destroyed or developing mental illness or cancer, going through an early menapause or finding you have osteoporosis etc and think if only I had paid attention to the celiac diagnosis.....

The diet is hard at first but it is doable and we are here to help in any way we can.

Skylark Collaborator
Skylark
Posted

Thanks for the replies....

I guess what I'm really wondering, is that given my lack of symptoms, does it matter? Do I have to be gluten free?? If it only makes me symptomatic a handful of times, is it worth the whole gluten free headache??! And to what extent do you have to be gluten free? Only a handful of products in my pantry are gluten free.... can you eat gluten in small amounts? I.e. if the packet says 'May contain gluten'

The big concern with celiac is bone density. It's not yet clear whether people with silent celiac disease absorb enough calcium and vitamin D for bone health. You are not a "silent" celiac either if you have days-long episodes of pain. Your inability to handle fatty foods is from celiac malabsorption. There is also an idea of latency with celiac disease. People with elevated TTG and negative biopsy have been followed in studies and many convert to full-blown classic celiac with a positive biopsy within five years. If your gut is healthy now by biopsy (which would surprise me), you can preserve your health by going onto the gluten-free diet.

There are other risks with TTG autoantibodies. The autoantibodies can cause neurological damage, arthritis, and celiac autoimmunty seems to trigger other autoimmune diseases like Hashimoto's thyroiditis or Sjogren's. Doctors are not very aware of these problems but we see them around here all the time. Basically, your immune system is currently primed for self-attack. If you go off gluten, the TTG antibodies should go away and you "shut down" the autoimmunity.

Your diet should be as gluten-free as you can possibly make it. Then when the inevitable traces creep in that you are not aware of, your body is healed enough that there is not damage from the unavoidable exposure. "May contain gluten" is not a good idea.

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 pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed. Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    2. knitty kitty
      - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

      Hello, @Jordan Carlson, So glad you're feeling better. Tecta is a proton pump inhibitor. PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12. Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the...
    3. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1. There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine. In Thiamine deficiency, the body...
    4. Scott Adams
      0

      Inmate with Celiac Disease Wins $630,000 After Jail Denies Gluten-Free Food

    5. trents
      - trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,019
    • Most Online (within 30 mins)
      7,748
    Nancy Adams
    Newest Member
    Nancy Adams
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Fruits & Veggies

      By knitty kitty · Posted

      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Positive biopsy

      By trents · Posted

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
      Positive biopsy

      By pothosqueen · Posted

      26F!
×
×
  • 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.