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

New To This/pre-test Question


Rachael

Recommended Posts

Rachael Newbie

Hello all, I'm really glad i found this forum. I'm trying to figure some things out and am finding I can relate to so many of the things being discussed here!! Where i'm at right now is I have been having symptoms that could be Celiac related since I was at least six yrs old I'm 31 now. About a week ago I went to a clinic really fed up with diarrhea/constipation, explnd some symptoms and now going for an Antitissue Transglutaminase blood test:P I wasn't eating much wheat as of the last three months, I never cut it out just bread mainly so I had soy sauce crackers, pizza and pasta here and there probably some hidden gluten as well. The Dr at the clinic said go eat lots of gluten containing foods and see me in a week with your blood test results. I've had an increase and change in symptoms in the last 5 days or so from increasing wheat and can see it is not good for me. I doubt I would be covered for additional testing or that I could even convince a Dr to run more tests if I was. I guess what I would gain if I tested positive is possibly more support from Dr's and maybe a small amount of financial assistance with a gluten free diet (i'm on a really low disability income). I guess the question is what are the odds with this test and is this just for Celiac detection or could it also be an indication of gluten intolerance alone. Also I have some other odd symptoms I haven't run across on this forum or on any searches I've done which i will have to get across to a Dr eventually. The strangest of these is what seems to be greasy urine, has anyone had that or know what that might be? Dr's seem to get tired of listening to all my symptoms about 1/4 way through so they are not getting the picture and of course the picture gets bigger when the symptoms get ignored, very frustrating. I need a good Dr but can't hold my breath. Any thoughts suggestions would be greatly appreciated, this is all rather overwhelming with all the information! Thanks.

Rachael


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



Celiac.com Sponsor (A8-M):



VydorScope Proficient

It will take more then a week of gluten to impact the test, more like 3 months. If you get sicker when you add gluten, and gett better when you take it away then you have your answer.

I would suggest at this poitn you go completely gluten-free for a while and see what happens, If your symptons start falling off, then you have your answer and do not need any testing. If they dont, then you need to check outher things.

I am not a doctor, nor do I play one on the internet, this is just my suggestion as an adlut with celiac disease. :)

Rachael Newbie
It will take more then a week of gluten to impact the test, more like 3 months. If you get sicker when you add gluten, and gett better when you take it away then you have your answer.

I would suggest at this poitn you go completely gluten-free for a while and see what happens, If your symptons start falling off, then you have your answer and do not need any testing. If they dont, then you need to check outher things.

I am not a doctor, nor do I play one on the internet, this is just my suggestion as an adlut with celiac disease. :)

Hmmm so I'm guessing people have had negative results even after eating gluten for a long time perhaps it has to do with the individual. I'm not sure how much i was having either. I can see how a week wouldn't make much difference on the tests though now after reading some of the other posts. I still feel like I would be better off in the long run with a diagnosis. I'm worried that because my symptoms are so chronic that I wouldn't see improvement for a long time anyway. Of course self harm isn't the way to go either. The medical system would save so much money if they just exercised some preventative measures. I've been to the Dr's office so many times without any help, it's really strange that they are so eager to diagnose my symptoms and give me drugs but have no interest in why i'm sick beyond the most basic tests. I'm thinking maybe they haven't figured out how to cash in on Celiacs or early onset of other diseases:P

Rachael

VydorScope Proficient

For more details on how much gluten you need to eat, and for how long check this artical:

https://www.celiac.com/st_prod.html?p_prodi...-45105321956.5c

The "rule of thumb" that members here use is "2-3 pieces of bread everyday for 2-3 months".

Alot fo doctors consider the results of the diet to be diagnositc, my son's peditrician is in that group do docs, my son's GI doc is the kind that wants to do tons of test before commiting.

I tend to agree with teh diet diagnostic as being most reliable any more... :)

Rachael Newbie
For more details on how much gluten you need to eat, and for how long check this artical:

https://www.celiac.com/st_prod.html?p_prodi...-45105321956.5c

The "rule of thumb" that members here use is "2-3 pieces of bread everyday for 2-3 months".

Alot fo doctors consider the results of the diet to be diagnositc, my son's peditrician is in that group do docs, my son's GI doc is the kind that wants to do tons of test before commiting.

I tend to agree with teh diet diagnostic as being most reliable any more... :)

Thanks for the link that helps!! :) I certainly may have to go with a diagnosis through diet and not worry so much about the tests. Getting healthy is the priority. As I i've noticed even people with all the tests to proove they can't have gluten sometimes still lack support from people close to them :(

Thanks,

Rachael

VydorScope Proficient
Thanks for the link that helps!! :) I certainly may have to go with a diagnosis through diet and not worry so much about the tests. Getting healthy is the priority. As I i've noticed even people with all the tests to proove they can't have gluten sometimes still lack support from people close to them :(

Thanks,

Rachael

I know many ppl here have that problem, but so far I have not. Hopefully you will not either!

Rachael Newbie

Interesting quote about the tTG which i'm pretty sure is the one I'm going to take.

"Tissue transglutaminase has been identified as the protein that is actually being targeted in the endomysium and the tTG test has been developed to measure antibodies to this protein directly rather than looking for its visual effect on the endomysium so it's easier, faster and less subjective than the endomysial test."

Link to full article Open Original Shared Link


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



Celiac.com Sponsor (A8-M):



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
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    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.