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

After Diagnosis

MKLP

Recommended Posts

MKLP Newbie
MKLP
Posted

I recently tested positive for Celiac disease back in June through the blood test. I will now be going to see a GI specialist on top of that. Through the research I have done, it states that the only definitive way to prove celiac disease is through the intestine biopsy which I will be asking for. The only thing is that I have now been gluten free for the past few months and it will still be at least a few months before I get the biopsy done, won't it prove inconclusive since I am starting to heal? Also, although I have been gluten free for the last few months I have to say I definitely don't feel 100%. Did anyone find that it took a while to recover from the damage or are you supposed to see immediate effects of going gluten free? I for example, now have indigestion which I never had before, I am extremely tired, and my stomache is sore. On the positive side however, I am not going to the bathroom 20+ times a day (no exageration) and my hair is starting to get thicker now. Any feedback on your experience would be much appreciated!

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

Celiac.com Sponsor (A8-M):


JillianLindsay Enthusiast
JillianLindsay
Posted

I would say you are showing signs of healing (less bathroom trips, more hair) and also gluten withdrawal! Yes, it exists. I have been gluten-free for 5 weeks and went through a withdrawal period and have had new symptoms pop up during the healing process. Some people feel immediate relief and some take up to a year to feel themselves again, it's a very individual response to the diet. Also, while healing some can't have the gluten-free alternatives to wheat foods (highly processed foods) and have to stick to a very natural diet of meats, veggies, fruits, brown rice, and maybe potatoes. Some people have to avoid dairy for a little while during healing and some have to avoid acidic foods and/or caffeine, then slowly add things back in once they are feeling better.

Did your GI tell you to continue eating gluten-free leading up to the biopsy? My understanding is that you shouldn't change your diet until after the biopsy to avoid a false negative. Depending on how long you've been sick they may still be able to see if there is damage to the villi, but if you've been healing for a few months it may skew the results. The scopes are also very important for screening for other small-bowel diseases.

Has your DR addressed any vitamin deficiency issues? Many people with celiac disease have anemia (low iron and b12) which make one very tired, along with other possible vitamin deficiencies (calcium, folic acid, etc.).

Good luck and welcome to the forum :)

Jillian

I recently tested positive for Celiac disease back in June through the blood test. I will now be going to see a GI specialist on top of that. Through the research I have done, it states that the only definitive way to prove celiac disease is through the intestine biopsy which I will be asking for. The only thing is that I have now been gluten free for the past few months and it will still be at least a few months before I get the biopsy done, won't it prove inconclusive since I am starting to heal? Also, although I have been gluten free for the last few months I have to say I definitely don't feel 100%. Did anyone find that it took a while to recover from the damage or are you supposed to see immediate effects of going gluten free? I for example, now have indigestion which I never had before, I am extremely tired, and my stomache is sore. On the positive side however, I am not going to the bathroom 20+ times a day (no exageration) and my hair is starting to get thicker now. Any feedback on your experience would be much appreciated!
MKLP Newbie
MKLP
Posted
  • Author
I would say you are showing signs of healing (less bathroom trips, more hair) and also gluten withdrawal! Yes, it exists. I have been gluten-free for 5 weeks and went through a withdrawal period and have had new symptoms pop up during the healing process. Some people feel immediate relief and some take up to a year to feel themselves again, it's a very individual response to the diet. Also, while healing some can't have the gluten-free alternatives to wheat foods (highly processed foods) and have to stick to a very natural diet of meats, veggies, fruits, brown rice, and maybe potatoes. Some people have to avoid dairy for a little while during healing and some have to avoid acidic foods and/or caffeine, then slowly add things back in once they are feeling better.

Did your GI tell you to continue eating gluten-free leading up to the biopsy? My understanding is that you shouldn't change your diet until after the biopsy to avoid a false negative. Depending on how long you've been sick they may still be able to see if there is damage to the villi, but if you've been healing for a few months it may skew the results. The scopes are also very important for screening for other small-bowel diseases.

Has your DR addressed any vitamin deficiency issues? Many people with celiac disease have anemia (low iron and b12) which make one very tired, along with other possible vitamin deficiencies (calcium, folic acid, etc.).

Good luck and welcome to the forum :)

Jillian

Thank you for the welcome. Unfortunately the GI gave me no instructions and said it will just be an initial consultation so I guess I will find out then. They didn't find any vitamin deficiences, however I am a little skepitcal of the doctor I am seeing as she is only filling in for my regular doctor while she is on mat leave. This sub had to look on her blackberry what celiac was. Scary! Anyways, thank you for the info because I was just feeling unsure about my symptoms and it sounds like what I am going through is normal.

The Fluffy Assassin Enthusiast
The Fluffy Assassin
Posted
Thank you for the welcome. Unfortunately the GI gave me no instructions and said it will just be an initial consultation so I guess I will find out then. They didn't find any vitamin deficiences, however I am a little skepitcal of the doctor I am seeing as she is only filling in for my regular doctor while she is on mat leave. This sub had to look on her blackberry what celiac was. Scary! Anyways, thank you for the info because I was just feeling unsure about my symptoms and it sounds like what I am going through is normal.

Jillian is right that you need to be eating gluten before the biopsy. I think the rule of thumb is several slices of whole wheat bread per day for at least 6 weeks. If you don't feel like reverting to going to the bathroom 20 times a day and losing hair for 6 weeks, you can always cancel the biopsy and consider yourself sufficiently diagnosed. Regardless, you may want to see an allergist to see if your indigestion is caused by food allergies (many, possibly most celiacs have several). And as Jillian also says, you might consider giving up dairy. In that case, it's probably most celiacs are casein intolerant.

Good luck to you, and I hope you find your answer soon.

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. 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...
    2. 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...
    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.

      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...
    4. Scott Adams
      0

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

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - 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.

      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.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,330
    • Most Online (within 30 mins)
      7,748
    klkarius
    Newest Member
    klkarius
    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
      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?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

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

      By trents · Posted

      Contact them.
×
×
  • 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.