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

Decided I Want To Be Tested For celiac disease

Brittany85

Recommended Posts

Brittany85 Rookie
Brittany85
Posted

I've attempted to be gluten free for almost a month and I know I have to be on full gluten for a certain amount of time for testing. I'm going to schedule an appt with my midwife for testing (just because I have a good relationship with her, my primary moved recently, and she offers lab stuff). So my questions are:

What do I need to do to prepare for testing? I.e., how to go back on gluten "properly," what I should do to minimize the s$#&tiness of glutenization, etc.

What types of tests should I ask for? My mother tested positive but I think it was only a blood test, not a biopsy.

I'm breastfeeding. Are there additional considerations because of this?

Any other tips for me? I'm sure there are threads about this, but I'm not sure what I would search for...

Thank you for your replies.

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

Celiac.com Sponsor (A8-M):


eatmeat4good Enthusiast
eatmeat4good
Posted

I have read that you have to eat the equivalent of 4 slices of bread a day for at least 3 months. The ask for a full Celiac Panel and an Endoscopy with biopsy to diagnose Celiac.

If you already know the s$#&tiness of getting gluten, then I fear you are in for it if you challenge 3 months. There are threads on here about how to deal with gluten symptoms but most of them are only symptom treating with OTC meds that you likely cannot take due to breastfeeding. Like Pepto Bismol, Advil, Tylenol. I hope you are not one of those who end up testing negative at the end of it and yet find that you have to be gluten free.

The midwife won't be able to help with the biopsy but she may be able to refer you to a Gastroenterologist. Depends how thorough you want your testing to be.

It sounds like you need a solid diagnosis to be able to stay gluten free.

Gluten avoidance makes you feel better right? Why not go with it? The one worry I would have, aside from you feeling s$#&ty, is that if you are Celiac and nursing, then 3 full months of eating gluten could be interfere with your absorption of vitamins and nutrients and your body is already being extra challenged by the nursing. I'm not sure but I would worry as to whether it would interfere with your nursing. It might effect production of milk or cause you to feel like you have the flu for the whole time you are eating it. I'm not trying to discourage you if this is right for you. But I just wanted to mention those few things for you to consider.

Maybe someone else will have other suggestions.

Brittany85 Rookie
Brittany85
Posted
  • Author

Thank you for your reply. I just want to know what I'm dealing with, that's why I want to be tested. I wonder if the symptoms will be different than what I was dealing with before changing my diet... I'll continue doing research.

Thank you very much. I have so much to learn.

eatmeat4good Enthusiast
eatmeat4good
Posted

What were you dealing with before changing your diet?

Brittany85 Rookie
Brittany85
Posted
  • Author

Fatigue, constant constipation with occasional diarrhea, moodiness; spells (what I now recognize to be glutenization) of cold sweats, dizziness, nausea, rapid heartrate. Also bloating, stomach aches, and a rash on my arms that started to clear up after quitting gluten.

ravenwoodglass Mentor
ravenwoodglass
Posted

Fatigue, constant constipation with occasional diarrhea, moodiness; spells (what I now recognize to be glutenization) of cold sweats, dizziness, nausea, rapid heartrate. Also bloating, stomach aches, and a rash on my arms that started to clear up after quitting gluten.

If the rash was incredibly itchy and left purplish scars that are slow to fade it might be DH. If you have DH you have celiac, period no more testing needed. You may want to consider eating enough gluten for the rash to come back and then seeing a derm to get it biopsied. Do make sure that the derm is familiar with biopsies for DH as they need to biopsy next to an active lesion not the lesions itself.

If you become very ill from the challenge some doctors will diagnose so keep your doctor in the loop on the challenge. Also talk to your midwife or the LaLeche league about it to ensure that the challenge doesn't impact your ability to breastfeed if that is your little one's sole source of nourishment.

Brittany85 Rookie
Brittany85
Posted
  • Author

If the rash was incredibly itchy and left purplish scars that are slow to fade it might be DH. If you have DH you have celiac, period no more testing needed. You may want to consider eating enough gluten for the rash to come back and then seeing a derm to get it biopsied. Do make sure that the derm is familiar with biopsies for DH as they need to biopsy next to an active lesion not the lesions itself.

If you become very ill from the challenge some doctors will diagnose so keep your doctor in the loop on the challenge. Also talk to your midwife or the LaLeche league about it to ensure that the challenge doesn't impact your ability to breastfeed if that is your little one's sole source of nourishment.

Great information! Thank you! Is there a certain form of gluten that is the most effective in this challenge?

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

Celiac.com Sponsor (A8-M):


ciamarie Rookie
ciamarie
Posted

Great information! Thank you! Is there a certain form of gluten that is the most effective in this challenge?

Just from what I've picked up from baking, etc. I'd say the higher gluten flours would be used in the 'artisan' type breads, and possibly pasta. The lower gluten flours would be used in cakes.

Brittany85 Rookie
Brittany85
Posted
  • Author

Just from what I've picked up from baking, etc. I'd say the higher gluten flours would be used in the 'artisan' type breads, and possibly pasta. The lower gluten flours would be used in cakes.

Thank you so much.

eatmeat4good Enthusiast
eatmeat4good
Posted

Ugh, the rash and all your symptoms certainly sound like Celiac. I agree with biopsy of the rash if you can. It might be the quickest way to get diagnosed. You don't wanna feel like crap for the next 3 months. But I have also read that if you are not eating gluten your rash may test negative. good luck

researchmomma Contributor
researchmomma
Posted

You also mentioned that your Mom tested positive. Is she diagnosed with Celiac? My daughter went back to eating gluten for two weeks and she couldn't take it (neither could we because her moods were horrible).

I wish you good luck and keep us posted.

Brittany85 Rookie
Brittany85
Posted
  • Author

You also mentioned that your Mom tested positive. Is she diagnosed with Celiac? My daughter went back to eating gluten for two weeks and she couldn't take it (neither could we because her moods were horrible).

I wish you good luck and keep us posted.

Yes, she was diagnosed. She's helping me through this. It's been two whole days of being back on gluten and I feel just like I did before: aweful. I'm really trying to make the rash flare up to shorten this ordeal. It's never gotten really bad, though. Hmmm....

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.