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

To Test Or Not To Test...


ciavyn

Recommended Posts

ciavyn Contributor

Looking for opinions: I have severe bloating, gas, and "D" conditions periodically throughout the month, more often than not, which have worsened over the last two to three years. I've also been going under some of the worst stress of my life the last two to three years. Coincidence? :rolleyes:

Anyway, two years ago, a friend recommended I go with the gluten free eating when we compared symptoms, and I put it off as it seemed too limiting. Fast forward to the last two months or so, and I'm barely human. The symptoms are awful. So I decided to try it, and I've felt some relief intermittently over the last week. From what I understand, this takes some time and anything that might help is welcome, so I'll bide my time and stick with it.

So, question #1: Is it worth it to try and get tested for celiac? My doctor suspected I had IBS several years before, but since no one had any real concrete steps with which to proceed, so nothing ever happened. I DO NOT have health insurance, so if I go for testing, it's something I'll have to make payments on at my dr's office. Since it appears from what I've read that testing is often not very reliable, is it worth it to be tested?

Question #2: being currently self-diagnosed with issues with gluten, possibly a IBS or celiacs or an allergy (see question #1), I have no idea how to answer people when they ask me why I'm doing this strange eating thing ;) right before the holidays. For example, today I talked to a friend, I said it's possible I have an allergy to gluten or celiacs, and in that wonderfully snotty tone, he said, you're not self-diagnosing, are you? And my MIL thinks I'm over-reacting...which I suppose is easy to think when you are not the one embarrassed in public, a stomach three times it's normal size when affected, and D so bad I occasionally haven't made it to the restroom. Yep, I'm over-reacting. Grrr...I digress. What do you say that gives you some credence, and avoid the reactions?


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



Celiac.com Sponsor (A8-M):



Lynayah Enthusiast
Looking for opinions: I have severe bloating, gas, and "D" conditions periodically throughout the month, more often than not, which have worsened over the last two to three years. I've also been going under some of the worst stress of my life the last two to three years. Coincidence? :rolleyes:

Anyway, two years ago, a friend recommended I go with the gluten free eating when we compared symptoms, and I put it off as it seemed too limiting. Fast forward to the last two months or so, and I'm barely human. The symptoms are awful. So I decided to try it, and I've felt some relief intermittently over the last week. From what I understand, this takes some time and anything that might help is welcome, so I'll bide my time and stick with it.

So, question #1: Is it worth it to try and get tested for celiac? My doctor suspected I had IBS several years before, but since no one had any real concrete steps with which to proceed, so nothing ever happened. I DO NOT have health insurance, so if I go for testing, it's something I'll have to make payments on at my dr's office. Since it appears from what I've read that testing is often not very reliable, is it worth it to be tested?

Question #2: being currently self-diagnosed with issues with gluten, possibly a IBS or celiacs or an allergy (see question #1), I have no idea how to answer people when they ask me why I'm doing this strange eating thing ;) right before the holidays. For example, today I talked to a friend, I said it's possible I have an allergy to gluten or celiacs, and in that wonderfully snotty tone, he said, you're not self-diagnosing, are you? And my MIL thinks I'm over-reacting...which I suppose is easy to think when you are not the one embarrassed in public, a stomach three times it's normal size when affected, and D so bad I occasionally haven't made it to the restroom. Yep, I'm over-reacting. Grrr...I digress. What do you say that gives you some credence, and avoid the reactions?

Yes, it is worth it to see a doctor. Please do.

Others' opinions: All that matters is how you feel about YOU. Do what you think is right. If others understand, fine. If they don't, so be it. Do not worry about them.

Come here, and we'll give you all the support you need. Not everyone understands, but we do.

ksymonds84 Enthusiast

I would get all the testing done that you can possibly afford so that you will not second guess yourself later. The problem for some (not all) who self diagnose sometimes find themselves in a cycle of whether or not they really have a problem with gluten and find it very hard to stick to the diet. I did the self diagnoses thing kind of (my family doctor believed me to be gluten intolerant) but still kept questioning everything and wanted to make sure since this diet is for life! So I did the gluten challenge ect to get an official diagnoses to keep me straight. Now having said that, not everyone is like me and you will find plenty of wonderful self diagnosed people here who went gluten free on there own and have never looked back! Good luck with whatever you decide to do.

ang1e0251 Contributor

I am self dx'd. It was a question of economics for me. I refused to challenge months later when I could have afforded it again. The difference in my health was so dramatic to me and my family, I've never had a doubt. If you can test, go ahead. It seems like you would find a dx comforting when questioned by others.

You will have to go back to eating gluten to be tested.

ciavyn Contributor

Thank you for your thoughts. Since finances don't provide much in the way of extra funds - what with Christmas right around the corner - I may not have too many choices right now. But I'll call the doctor and see what I'd be facing. Since I just recently went off gluten, I think I'd still be okay to be tested. (?) I'm not sure.

The other issue is that this takes time to see what works the best for you, from what I've read, and it's hard to be patient. :) Especially when some of your issues are quite attention attracting...ugh. No doctor's diagnosis can tell you what is best for your lifestyle, or what is healthiest for you, and if nothing else, this is forcing me to eat how I SHOULD eat, even when I don't feel like it. I'm not willing to throw away my investment on a yen for gluten.

Archived

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

  • 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 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748

    dnamutant
    Newest Member
    dnamutant
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.