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

Confused

ycavaz

Recommended Posts

ycavaz Rookie
ycavaz
Posted

Hi, I'm new and this is my first post. I've had hashimoto's for 11 yrs and I get more sick every year. So I decided to order the gluten sensitivity test from enterolab because of unresolved diarrhea for many years. Yesterday the results came back as positive for antigliadin antibodies with a level of 49.

I was told I have to maintain a permanent gluten free diet. Does that make me a celiac now? Should I see a gastroenterologist and have them confirm it or just accept it and do gluten-free forever? I'm really confused.

Yvette

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

Celiac.com Sponsor (A8-M):


Tim-n-VA Contributor
Tim-n-VA
Posted

Do you want a diagnosis that the general mainstream medical community will recognize? If so, continue to consume gluten, see a GI and get the blood work and biopsy. If you don't care about that acceptance/recognition, try a gluten-free diet and see if you feel better.

GFinDC Veteran
GFinDC
Posted

Hi Yvette,

You said you are getting sicker every year right? One of the "nice" things about celiac is that you can make a big improvement in your health by going on the gluten-free diet. You can go to a gastroenterologist and have a biopsy done, or you can get blood testing for gluten antibodies. Or you can try the diet and see if it makes your symptoms improve. If you have digestive symptoms like D or c, or gas, bloating, pain and they get better on the diet, that is a pretty good sign you should avoid gluten. The gastro biopsy may not show any intestinal damage, but you could still be celiac and have damage to other parts of the body. So if you have other non-digestive symptoms that improve on the diet, that is a good thing too right?

There is some debate over the Enterolab testing. Dr. Fine says the antibodies to gluten show up in the stool before they show up in the blood. So it would basically be an earlier detection method than blood antibodie tests. If that is true then you might test negative on the blood and biopsy but still have the disease. It seems like the blood tests miss some cases of celiac from what I read on the site here. They aren't 100% reliable.

So, long story short, you need to decide if you want to try the diet or go for further testing. If you do go for the blood tests, you need to keep eating gluten in the meantime so the tests will have a chance to work.

ycavaz Rookie
ycavaz
Posted
  • Author

It would be for my husband and family, so they will take me seriously. I went gluten free yesterday, as soon as I found out but my husband is already telling me to see a doc.

He is one of those people who are disgustly healthy and doesn't understand chronic diseases nor my distrust of docs who bungled my hashi dx for 2 yrs. He trusts everything a doc says while I don't because of the things I've been told about my thyroid.

maile Newbie
maile
Posted
It would be for my husband and family, so they will take me seriously. I went gluten free yesterday, as soon as I found out but my husband is already telling me to see a doc.

He is one of those people who are disgustly healthy and doesn't understand chronic diseases nor my distrust of docs who bungled my hashi dx for 2 yrs. He trusts everything a doc says while I don't because of the things I've been told about my thyroid.

my husband is the same way, for that reason I did do the enterolab testing and for him it settled the matter, that and seeing my reaction to going gluten-free and then getting glutened during the holidays.

I did have a blood test (not sure which one, wasn't told at the time) and it was negative but that didn't surprise me as I have been gluten lite for years and had been gluten-free for 2 weeks prior.

There are some good articles on the main site about gluten sensitivity (the authors are various doctors) that you could print out and show those to your hubby, good luck, I understand how frustrating it can be with husbands (mine anyway) :rolleyes:

ycavaz Rookie
ycavaz
Posted
  • Author

I'll discuss it with him and print those articles and hopefully he will understand that I am not up to getting a celiac dxg and doc shopping. As it is I am seeing a rheumy on tues. due to other symptoms. I'm hopeful that going gluten free will help.

Mother of Jibril Enthusiast
Mother of Jibril
Posted
It would be for my husband and family, so they will take me seriously. I went gluten free yesterday, as soon as I found out but my husband is already telling me to see a doc.

He is one of those people who are disgustly healthy and doesn't understand chronic diseases nor my distrust of docs who bungled my hashi dx for 2 yrs. He trusts everything a doc says while I don't because of the things I've been told about my thyroid.

My husband is like that too... he is NEVER sick. We've been married for 12 years and I've only seen him sick maybe three or four times. He's on board with the GFCFMF diet... he always wanted me to eat more fruits and vegetables ;) ... but he doesn't understand anything about autoimmune disorders and he's not really willing to learn (which is a bit frustrating since he's not a stupid man).

Anyway... I also went gluten-free after I was diagnosed with Hashimoto's. For the first time since I hit puberty my health is improving and I feel like I have some control over my body!! :) I'm still taking thyroid hormones, but I no longer have any of the symptoms of hypothyroidism. I've lost about 30 pounds and my skin looks great :lol: Most importantly, I'm no longer in pain and my bloodwork (CBC, CMP) is totally back to normal.

Gluten can definitely affect more than just your intestines, which is the definition of celiac disease. But... testing for antibodies is still pretty unreliable (lots of false negatives). A positive response to the gluten-free diet is a much better diagnostic tool. Whether gluten is destroying your intestines, thyroid, liver, brain, joints, etc... the cure is the same. Stay off gluten 100%. Since I figured out that I'm also intolerant to corn I've cut 99% of processed foods out of my diet. I've been really, REALLY strict for the last couple of months and it's definitely paying off.

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

Celiac.com Sponsor (A8-M):


ycavaz Rookie
ycavaz
Posted
  • Author
My husband is like that too... he is NEVER sick. We've been married for 12 years and I've only seen him sick maybe three or four times. He's on board with the GFCFMF diet... he always wanted me to eat more fruits and vegetables ... but he doesn't understand anything about autoimmune disorders and he's not really willing to learn (which is a bit frustrating since he's not a stupid man).

My husband is exactly the same way. We fight about my illness but he refuses to read anything about it. This May makes 12 yrs for us and I can remember only 3 times he has been sick. Sometimes I envy him.

sbj Rookie
sbj
Posted
I'll discuss it with him and print those articles and hopefully he will understand that I am not up to getting a celiac dxg and doc shopping. As it is I am seeing a rheumy on tues. due to other symptoms. I'm hopeful that going gluten free will help.

Hi ycavaz:

You don't need a diagnosis of celiac to go on a gluten free diet. However, do you think you have celiac disease? If you have cleiac disease then you should do more than just go on a gluten free diet. I read that advice here a lot - "try the gluten free diet, it can't hurt" - but when you are initially diagnosed with celiac disease you do more than just change your diet. Typically you get a complete blood count. Your doctor checks for mineral, vitamin, and other nutritional deficiencies. You consult with your doctor about any other symptoms you might have that could potentially indicate other auto-immune conditions. If you have suffered with celiac disease for a long time, as it seems you have, you may have intestinal damage - that damage could lead to cancer. A GI might want to take a look for signs of such damage. You should also get a bone density scan to look for osteopenia or osteoporosis.

A gluten free diet won't hurt you, and no one here will say that you must get a celiac diagnosis. But when you are initially diagnosed with celiac disease you should do more than just change your diet. You might have intestinal damage or nutritional deficiencies or low bone density right now and those conditions might need to be treated right now.

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.