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

Celiac?


CandaceD

Recommended Posts

CandaceD Newbie

Hello....

I guess I am just rather anxious and would like the opinion of others...

To start off - I had the Celiac Blood Test done and my IgA, IgG and my Tissue Transglutaminase IgA came back negative....

My FERRITIN (IRON) was pretty low at 8 (range is 10-291 ug/L)

Roughly two months ago I started getting realllly smelly flatulence followed by visually noticable abdominal bloating, constipation and restlessness (If felt like I was awake most of the night).

I've never had a problem with any of this before. I eat a VERY healthy diet and go to the gym 5/6 times a week. I thought maybe I was eating two much fiber and cut back my bran/flax breakfast and vegetable/fruit intake.

Didnt help. My family was getting prettty grossed out to say the least with how bad my gas smelt. It is/was soooooooooo embarassing.

I went to the walk in clinic and they suggested milk of magnesia... well we know what that does. It releave the bloating for a few days.

My parents went on vacation, I was in a rush so I made a tuna caserole and frozen lasanga for my sisters (which I ate for dinner two nights in a row - *Note - I rarely eat any form of white flour pasta/bread etc)... I swelled up like a balloon... My Parents came home, saw how sick I was and made me a doctors apt. We then started self diagnosing. My Aunt and Grandmother (on my moms side) both are Celiac. I started consuming wheat like a mad women knowing I was going to ask my doctor for a blood test. I was horribly dizzy, bloated, constipated,awful cramps, my brain was a complete fog, it felt like my lungs were heavy/tired???

I know I stress out wayy to quickly, I sufffer from axiety and irritablity all the time. I have psoriasis on my elbows, I had hypoglocemic as a kid...

Its two months before I can see a G.I.

I've been gluten free since Saturday and lactose free for 2 days (today is day 5)and my bowels have started moving, my head is much clearer, I still have gas and bad cramps...

SHOULD I TRY A GLUTEN FREE DIET OR WAIT TO SEE A G.I AT THE END OF APRIL????

Its soooooooooo expensive eating gluten free... What if I just have IBS

ANY Suggestions would be soooooooooo appreciated.

Thanks in advance


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



Celiac.com Sponsor (A8-M):



mommida Enthusiast

You have to eat gluten to go through testing.

Roda Rising Star

If you are wanting any testing, blood work, biopsy or both you need to be on a full gluten diet. I personally believe it is better to stay on gluten and get the testing out of the way first. If you go off gluten now and want to testing later you would have to go on a gluten challenge for appx. 3 months consuming 3-4 slices of bread or equivilent/day. For some people the challenge is just to bad for them and they can't continue or it isn't enough time to give postitive test results. This happened with my youngest son who had positive blood work. We took him off gluten without the biopsy and tried later to put him back on. He couldn't tolerate it. He still has a celiac diagnosis without it because of his symptoms, positive bloodwork, improvements seen on a gluten free diet, return of symptoms back on gluten and my celiac diagnosis. Even if you have testing done and it is negative(a lot of false negatives) at least you had it done before gluten free(the best chance for accurate testing) and go from there. Of course since you correlate your symptoms with gluten consumption, it is worth a trial of gluten free even if you test negative. Since you have a family history, your chances of having it to go up considerably.

Call the GI's office and ask to be put on a waiting list. What a lot of doctor's offices will do is call you if there is a cancellation and you could get seen earlier.

If you decide to go here are a list of the tests you need to have done.

1. total IgA

2. IgA/IgG tTg(tissue transglutaminase antibody)

3. IgA/IgG DGP(deamidated gliadin peptide) This is the newest test

4. IgA/IgG AGA(antigliadin antibody)

Also don't settle for a diagnosis of IBS. A lot of folks on here were diagnosed with IBS for years just to find out they had celiac. It is often referred on here as "I Be Stumped" because, IMHO, it is just a catch all crap diagnosis for when the doctors don't know what is wrong. Of course the bowel is irritated, but why?? IBS diagnosis doesn't give you the "WHY."

CandaceD Newbie

Thanks for your comments! I'm going to continue with my gluten/lactose free diet for a couple weeks. I'm already seeing a difference in my bloating/cramps and general disposition... Gas is still active.... Today I am cutting out peanut butter, apples and pears. In 2 weeks i'll start adding things back in, starting with gluten. I won't be seeing the G.I until the end of April... I know I want to be actively consuming gluten products when I go see him and ask for a biopsy... Which I'm sure won't be for a few weeks after that.

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
      133,333
    • Most Online (within 30 mins)
      7,748

    Donna Chem
    Newest Member
    Donna Chem
    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.