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

Newbie Here...

Phedre

Recommended Posts

Phedre Rookie
Phedre
Posted

Hello everyone - my name is Phedre and I'm new here. I'm currently awaiting test results to find out if I have Celiac, though from everything I've researched, I'm 99% certain that I am. Our family has always had stomach issues - my grandmother has them, my father has them, and my sister as well and all of us with very similar symptoms. For the longest time, we were told it was likely IBS and that there was little that could be done for us but recently a new light has been shed on the situation...

My sister was just recently diagnosed with Celiac after years of misdiagnoses and difficulties. She's been through just about every test we could imagine and after being found to have several vitamin deficiencies and severe anemia, she tested very highly positive on a Celiac panel. We got word today that her biopsy came back positive as well (we had anticipated this - it was just for confirmation.

When the test came back, her immunologist told my mother that any first and second degree relatives with symptoms should be tested as well because it is very likely that they are also suffering from Celiac. I went in yesterday to speak with my PCP and to have blood drawn for my Celiac panel. He agreed with me that all of my symptoms match and that it would explain the GI problems that he and I have been working for months to try and explain.

When I first found out that Celiac was a possibility, I was devastated, however now that I have had some time to process and do some research, I am feeling much more positive. I have had these unexplainable GI issues since I was 12 years old along with fatigue, depression, and other symptoms and just knowing that this could explain them and allow me some relief is a huge thing for me. For that reason, I am trying my best to stay positive and also to learn as much as I can about gluten-free living in the meantime.

I joined this board on a recommendation from a friend (she is not a member but she often reads for information because her mother is a Celiac) and I am hoping to find good information and support here. From what I have read so far, I have not been disappointed! :) I am also hoping my mother will join as well as I think she could use some help too.

So that is my story... I probably won't have my results back on the blood test for a week or so and my doctor said that it would probably be a good idea to have an endoscopy to confirm once that happens. The waiting game is frustrating for me but at least now I feel like we might have some sort of a lead on what is going on.

I look forward to getting to know the others here and to learn from their experiences :)

Phedre

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

Celiac.com Sponsor (A8-M):


happygirl Collaborator
happygirl
Posted

Phedre,

Welcome to the board! I think you'll find that this board really is a great resource. I'm glad that you joined and introduced yourself.

That's great that the doctor recommended that all relatives are tested. In case you need the list of the Celiac tests for other family members, you can find it here: Open Original Shared Link The rest of that website is great, also.

To make life a little easier when food shopping, here is a list of "bad" ingredients. https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html The good news is that on a daily basis, you won't often see a lot of those ingredients (unless you are looking at obvious gluten products....breads, pastas, pastries, etc.)

Here is a list of companies that won't hide any gluten in the ingredients. If you don't see wheat, rye, barley, malt, or oats clearly listed, then you don't have to worry that its in there "somewhere." It helps so that you don't have to worry about starches, colorings, flavorings, etc. Open Original Shared Link

When you get your results, make sure that you get a copy so that you know which tests were run and what the results were. Keep in mind that testing is not perfect, so even if you are negative, it may be worth it to try the gluten-free diet to see if it alleviates your symptoms.

If you are looking for a good pasta, try Tinkyada. Its a rice based pasta and one of the favorites of members of this board. www.tinkyada.com. You can often find it in grocery stores, health food stores, and online.

Best of luck! I hope that you find some much needed answers.

jerseyangel Proficient
jerseyangel
Posted

Hi Phedre :)

I just wanted to welcome you to the board. Feel free to ask any questions you might have--we're glad to help!

kbtoyssni Contributor
kbtoyssni
Posted

Welcome! Going gluten-free is the best thing that ever happened to me. My life is so much better now that I have my health so hopefully this will be the answer to your health problems, too.

mamaw Community Regular
mamaw
Posted

welcome.

You will find more info here than most doctors could tell you & yummy recipes to boot!!!!

mamaw

Guest lorlyn
Guest lorlyn
Posted

Just wanted to also welcome you to the board. I was so confused when they told me my 11 yearold daughter had Celiac. I had never heard of this disease before. It makes me sad for her and my husband who we know has it to, but did not get him tested to him being self employed. My daughter just had her one year gluten free anniversary 2 months ago and my husband will be gluten free for a year in a couple of weeks from now. My daughter has no more stomache aches now but my husband still has lasting effects. Every thing gets easier as time goes by, so just hang in there and read all you can from this site it is the best.

Take care

Phedre Rookie
Phedre
Posted
  • Author
Phedre,

Welcome to the board! I think you'll find that this board really is a great resource. I'm glad that you joined and introduced yourself.

That's great that the doctor recommended that all relatives are tested. In case you need the list of the Celiac tests for other family members, you can find it here: Open Original Shared Link The rest of that website is great, also.

To make life a little easier when food shopping, here is a list of "bad" ingredients. https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html The good news is that on a daily basis, you won't often see a lot of those ingredients (unless you are looking at obvious gluten products....breads, pastas, pastries, etc.)

Here is a list of companies that won't hide any gluten in the ingredients. If you don't see wheat, rye, barley, malt, or oats clearly listed, then you don't have to worry that its in there "somewhere." It helps so that you don't have to worry about starches, colorings, flavorings, etc. Open Original Shared Link

When you get your results, make sure that you get a copy so that you know which tests were run and what the results were. Keep in mind that testing is not perfect, so even if you are negative, it may be worth it to try the gluten-free diet to see if it alleviates your symptoms.

If you are looking for a good pasta, try Tinkyada. Its a rice based pasta and one of the favorites of members of this board. www.tinkyada.com. You can often find it in grocery stores, health food stores, and online.

Best of luck! I hope that you find some much needed answers.

Thank you for the warm welcome and the links! Already, they are helping to ease my anxiety about going gluten free. I feel fortunate to have found this place, especially because I already have a stockpile of recipes I am dying to try!

I am also fortunate to have some support during this transition - my mother is constantly researching and sending me the things she finds (as I send her what I find). Two heads are better than one, of course, so this has been really helpful. I'm still hoping she will join up here as well :)

Also, my boyfriend is a chef and many of the things he cooks have gluten in them (just by the nature of New Orleans food!) but he's already begun researching gluten free options for his recipes. He is even looking into making his own flour! We recently discovered the wonder of quinoa together (before I found out this was a factor) and now he is all excited about trying to find new ways to use it. His understanding and support means so much to me, I can't even tell you how much easier it is making things for me!

I am so happy I found this place because it just makes the gluten-free life seem so much less daunting. I'll take any help I can get!

I should add that I decided this morning that regardless of my test results, I will be going gluten-free (at least for a while) to see if that aleveates my symptoms. I figured "why not?" Even if the results are negative, having a positive change on the diet is confirmation enough for me!

Thanks for all of your help!

Phedre

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.

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. trents
      - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    2. SilkieFairy
      - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a...
    3. knitty kitty
      - 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.

      @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...
    4. Jane02
      - 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.

      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...
    5. knitty kitty
      - 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.

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

  • Member Statistics

    • Total Members
      133,336
    • Most Online (within 30 mins)
      7,748
    Jeffrey Yeres
    Newest Member
    Jeffrey Yeres
    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

    • trents
      IBS-D vs Celiac

      By trents · Posted

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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

      By Jane02 · Posted

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

      By knitty kitty · Posted

      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?
×
×
  • 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.