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

Got Results Back Today


Bethinjapan

Recommended Posts

Bethinjapan Rookie

I had my doctor appt. today to get the results of the blood tests and endoscopy. I've been eagerly counting down to this day expecting to learn something! Anything that could promise hope of feeling better! What a let down! She told me they were running the celiac panel and it would be sent to the States for evaluation, but it turns out, they didn't do that afterall. They only did the Anti Tissue transglutaminase IgA antibody at a local lab, which came back normal ( 3 in a range of <5 ) . While my pill cam showed lots of duodenal irritation a couple months ago, the endoscopy was perfectly clean. (I can say without a doubt that whoever reviewed the biopsies here has never seen celiac before, since it doesn't exist here. Whether that makes a difference or not, who knows!) My thyroid testing also came back fine, along with everything else that was tested for in those seven vials of blood.

She then, somewhat appologetically, told me she doesn't know what is causing my weight loss (22 pounds now in the last few months...I could stand to loose that much again and weight loss has never been easy for me.), but doesn't think there's anything to worry about at this time. I said, "Okay...Even though I'm having diarrhea every day??" She said daily diarrhea is okay as long as it's just one to three times a day and not like ten times a day and interfering with life. I wanted to cry right there and beg her to search further for the cause of my pain and tell her diarrhea might be normal for some people, but up until a couple years ago, it wasn't for me! But that was it. She didn't even see the need to do a colonoscopy.

So now what? I've been gluten free since the day these tests were taken just over three weeks ago. My stomach pain is much better, but the diarrhea is possibly worse. Was definitely worse at first, but still very much at least a daily part of my life. Joint pain and other symptoms haven't changed. So, I don't know what to conclude. Either the gluten free diet isn't working, or I'm still getting some cross contamination despite being very careful, or there are other issues/intolerances involved, or it just simply hasn't been long enough. My hubby has been very supportive and thinks I should stay gluten free for another month and see if it helps. He talked me out of stopping for pizza on the way home to wash away my tears!! Ha! I just feel very afraid that I am not going to find a solution to the pain, fatigue, etc. and I'm not functioning very well in my roles of wife, HOMESCHOOL MOMMY, etc etc. right now as a result of what I'm going through physically. I've been reading about the SCDiet, so would especially appreciate advice from anyone who is more knowledgeable or experienced with that, as much as I DON'T want to have to do that!

Thanks for listening! Sorry for the rant! This forum has already been a huge help, and I'm so thankful that I can come here for advice about this!

Beth


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



Celiac.com Sponsor (A8-M):



The Fluffy Assassin Enthusiast
...I said, "Okay...Even though I'm having diarrhea every day??" She said daily diarrhea is okay as long as it's just one to three times a day and not like ten times a day and interfering with life. I wanted to cry right there and beg her to search further for the cause of my pain and tell her diarrhea might be normal for some people, but up until a couple years ago, it wasn't for me! ...

Beth

Maybe it's just me, but my diarrhea ended when I gave up dairy and fruit. I think it was the fruit causing the problem (more specifically, fruit juice at every meal). I also added vast quantities of steamed vegetables to every meal, which probably also helped, though I've since dialed that back somewhat. You may want to look up fructose malabsorption on the Internet.

Bethinjapan Rookie

Thanks for the reply! That very well might be it! It's worth a try!! :)

ravenwoodglass Mentor

False negatives are unfortunately all to common. Sometimes our body gives us the answer that testing cannot. Since you are done with the testing now is the time to give the diet a good strict try.

If you are still consuming dairy you should delete it from your diet for a while as the same area's damaged by celiac or gluten intolerance are the areas responsible for creating the enzyme that is need to digest dairy.

It can also take a while to figure out all the places where gluten can be an issue. Things like cross contamination in production, natural flavors in foods, restaurants can be tough as there is a lot to watch out for and not all things that seem like they should be gluten-free are when prepared in a gluten filled kitchen.

I agree with your husband, keep up the diet for a bit longer. Also if he is a gluten eater or drinker do make sure that he brushes his teeth before you do any kissing.

chiroptera Apprentice

Sorry to hear about your troubles. Just wanted to say that many times a gluten problem goes along with a dairy problem so maybe you are dairy intolerance as well.? BTW, that is so awful that because someone is not wasting away (yet) that the doctors said it's okay to lose weight without trying. Also, it is very hard at first to make sure you aren't getting cross contaminated (I had to learn things like gluten doesn't come out of wooden utensils so don't use even if clean, get a new gluten-free only toaster) so maybe double check that. HTH!

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to tiffanygosci's topic in Coping with Celiac Disease
      13

      New Celiac Mama in My 30s

    2. - tiffanygosci replied to tiffanygosci's topic in Coping with Celiac Disease
      13

      New Celiac Mama in My 30s

    3. - RMJ replied to Riley.'s topic in Introduce Yourself / Share Stuff
      4

      Outgrow celiac?

    4. - knitty kitty replied to Riley.'s topic in Introduce Yourself / Share Stuff
      4

      Outgrow celiac?

    5. - knitty kitty replied to tiffanygosci's topic in Coping with Celiac Disease
      13

      New Celiac Mama in My 30s


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,980
    • Most Online (within 30 mins)
      7,748

    Cathal Brugha
    Newest Member
    Cathal Brugha
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
    • tiffanygosci
      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that Dietician appointment. There's a lot of information online but I do need to see a professional. There is too much to juggle on my own with this condition.<3
    • RMJ
      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and get tested occasionally to make sure the tests don’t turn positive again. If you test positive, of course the recommendation from me and others is to stop gluten entirely.  But if you’re unable to convince yourself to do that, could a positive test at least convince you to minimize your gluten consumption?  Immune reactions are generally what is called dose response, the bigger the dose, the bigger the response (in this case, damage to your intestines and body). So while I am NOT saying you should eat any gluten with a positive test, the less the better.  
    • knitty kitty
      @Riley., Welcome to the forum, but don't do it!  Don't continue to eat gluten!  The health problems that will come if you continue to eat gluten are not worth it.  Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually.  There's many of us oldsters on the forum who wish they'd been diagnosed as early.    Fertility problems, gallbladder removal, diabetes, osteoporosis and mental health challenges are future health issues you are toying with.   To dispel fear, learn more about what you are afraid of.  Be proactive.  Start or join a Celiac group in your area.  Learn about vitamins and nutrition.   Has your mother been checked for Celiac?  It's inherited.  She may be influencing you to eat gluten as a denial of her own symptoms.  Don't let friends and family sway you away from the gluten-free diet.  You know your path.  Stick to it.  Be brave. 
    • knitty kitty
      @tiffanygosci, Hello.  I apologize for your thread being hijacked.   I recognize your symptoms as being similar to what I experienced, the migraines, food and chemical sensitivities, hives, nausea, the numbness and tingling, joint pain, tummy problems, sleep problems, emotional lability, and the mom brain.  My cycle returned early after I had my son, and I became pregnant again with all my symptoms worsening.  Unfortunately, I lost that baby.  In hindsight, I recognized that I was suffering so much from Thiamine deficiency and other nutritional deficiencies that I was not able to carry it.   Celiac Disease affects the absorption of nutrients from our food.  There's eight B vitamins that must be replenished every day.  Thiamine Vitamin B1 becomes depleted first because it cannot be stored very long, less than two weeks.  Other B vitamins can be stored for two months or so.  But Thiamine can get low enough to produce symptoms in as little as three days.  As the thiamine level gets lower, symptoms worsen.  Early symptoms like fatigue and anxiety are often attributed to life situations, and so frequently go unrecognized by medical professionals who "have a pill for that".   I used to get severe migraines and vomiting after gluten consumption.  Thiamine and the other B vitamins are needed to turn carbohydrates, fats and proteins into fuel for our bodies.  With a large influx of carbohydrates from gluten containing foods, the demand for Thiamine increases greatly.  Available thiamine can be depleted quickly, resulting in suddenly worsening symptoms.  Emotional stress or trauma, physical activity (athletes and laborers) and physiological stresses like pregnancy or injury (even surgery or infection) increase the need for Thiamine and can precipitate a thiamine insufficiency. Pregnancy requires more thiamine, not just for the mother, but for the child as well.  The mother's Thiamine stores are often depleted trying to meet the higher demand of a growing fetus.  Thiamine insufficiency can affect babies in utero and after birth (autism, ADHD).  Having babies close together doesn't allow time for the mother to replenish thiamine stores sufficiently.   Thiamine insufficiency can cause migraines, pins and needles (paresthesia), and gastrointestinal Beriberi (gas, bloating, diarrhea or constipation, back pain).   Thiamine deficiency can cause blurry vision, difficulty focusing, and affect the eyes in other ways.  Thiamine deficiency can damage the optic nerves.  I have permanent vision problems.  High histamine levels can make your brain feel like it's on fire or swelling inside your cranium.  High histamine levels can affect behavior and mood.  Histamine is released by Mast Cells as part of the immune system response to gluten.  Mast Cells need Thiamine to regulate histamine release.  Mast Cells without sufficient thiamine release histamine at the slightest provocation.  This shows up as sensitivities to foods, smelly chemicals, plants, and dust mites.  Thiamine and the other B vitamins are needed to lower histamine levels.  Vitamin D is needed to calm the immune system and to regulate our hormones.  Menstrual irregularities can be caused by low Vitamin D.   Celiac Disease is a disease if Malabsorption of Nutrients.  We must take great care to eat a nutritionally dense diet.  Our bodies cannot make vitamins.  We must get them from what we eat.  Supplementation with essential vitamins and minerals is warranted while we are healing and to ensure we don't become deficient over time.  Our bodies will not function properly without essential vitamins and minerals.  Doctors have swept their importance under the rug in favor of a pill that covers the symptoms but doesn't resolve the underlying issue of malnutrition. Do talk to your doctor and dietician about checking for nutritional deficiencies.  Most blood tests for the eight B vitamins do not reflect how much is available or stored inside cells.  Blood tests reflect how much is circulating in the blood stream, the transportation system.  Blood levels can be "normal" while a deficiency exists inside cells where the vitamins are actually used.  The best way to see if you're low in B vitamins is to take a B Complex, and additional Thiamine and look for improvement.   Most vitamin supplements contain Thiamine Mononitrate, which is not easily absorbed nor utilized by the body.  Only thirty percent of thiamine mononitrate listed on the label is absorbed, less is actually utilized.  This is because thiamine mononitrate is shelf stable, it won't breakdown sitting on a shelf in the grocery store.  It's so hard to breakdown, our bodies don't absorb it and can't turn it into a form the body can use.  Take Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) which the body can utilize much better.  (Ask for an Erythrocyte Transketolace Activity test for Thiamine level.  Though not accurate, this test does better picking up on a thiamine deficiency than a blood test.) Are you keeping your babies on a gluten free diet?  This can prevent genetically susceptible children from developing Celiac Disease.   P. S. Interesting Reading  Thiamine deficiency in pregnancy and lactation: implications and present perspectives https://pmc.ncbi.nlm.nih.gov/articles/PMC10158844/ Descriptive spectrum of thiamine deficiency in pregnancy: A potentially preventable condition https://pubmed.ncbi.nlm.nih.gov/37458305/ B vitamins and their combination could reduce migraine headaches: A randomized double-blind controlled trial https://pmc.ncbi.nlm.nih.gov/articles/PMC9860208/
×
×
  • 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.