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

Potatoes


isiskingdom

Recommended Posts

isiskingdom Contributor

I have been having a terrible time eating almost everything. I went a whole day of not eating anything and was weak but felt ok. Yesterday I ate a baked potato now I am back to being in lots of pain and feeling sick stuck laying on the couch. I was reading about iorn poisoning do you think that is what it could be? It hurts on my right side and my upper top of my stomach. I have a new doctor and will be getting Another endoscopy done to confirm I have celiac and will get to eat 4 pieces of REAL bread the day before. I am sooooooooooooooooo excited about being able to eat some real food even if its only short lived. For me being on a gluten-free diet since March I am still having pain everyday and suffering non stop. I don't get it!!


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



Celiac.com Sponsor (A8-M):



Franceen Explorer

Eating 4 slices of bread the day before an endoscopy may not be enough for sufficient challenge test! I was told I had to eat LOTS of wheat/gluten products everyday for at least 3 weeks prior to testing! I did not want to do that because I have had 100% success with Gluten Free diet and no other allergies/food reactions and my symptoms were gone completely.

BUT, I do know that intestinal damage does not occur overnight after just one ingestion of gluten - it's a progressive thing, even if pretty fast - but not that fast (so my Dr says)!

As for the pain with eating anything at all, it sounds more like a stomach ailment unrelated to celiac or allergy. I would consult an Internal Medicine specialist, in addition to Gastro. Have you had Upper GI series? Lower GI series, Sonogram, Xrays, etc as well?

GOOD LUCK!!! Hope you find out what it is - sounds like what I had when I had gallstones - but you've been there done that already!

Franceen

Ursa Major Collaborator

Good grief, your doctor is pretty clueless! If you've been diagnosed with celiac disease, what the heck is the point of re-checking if you really have it?

And in fact, if you want to get a positive biopsy (there is no point, though), you'd have to eat about four slices a day for three to six months (not three weeks) to even have a remote chance of getting a positive biopsy.

If you would do that, you would totally destroy your villi again and risk getting extremely ill. As well as possibly having permanent damage.

About the potato: I can't tolerate potatoes, they might (not always do) give me pretty much the same symptoms as eating gluten. You might have the same problem.

You need to do an elimination diet to figure out other intolerances. I see you have eliminated dairy. What about soy? Those are the first ones to cut out to see if it makes a difference.

isiskingdom Contributor
Good grief, your doctor is pretty clueless! If you've been diagnosed with celiac disease, what the heck is the point of re-checking if you really have it?

And in fact, if you want to get a positive biopsy (there is no point, though), you'd have to eat about four slices a day for three to six months (not three weeks) to even have a remote chance of getting a positive biopsy.

If you would do that, you would totally destroy your villi again and risk getting extremely ill. As well as possibly having permanent damage.

About the potato: I can't tolerate potatoes, they might (not always do) give me pretty much the same symptoms as eating gluten. You might have the same problem.

You need to do an elimination diet to figure out other intolerances. I see you have eliminated dairy. What about soy? Those are the first ones to cut out to see if it makes a difference.

This is a new doctor I am seeing he doesn't trust the one I had before which is why I am having the endo done Again. He said that for testing for celiac it came back at a 9 whatever that means and he is not sure if I have celiac he thinks it is something else. I have no soy in my diet either. My day consest of cocoa pebbles or cream of rice for the morning. Lunch is rice noddles with maybe a slice or 2 of Carl Budding turkey. Dinner is a bake potato,a veggie and sometimes some meat thats all I eat and to still have problems I don't understand. I suffer Everyday. I am on some meds and have even taken them out because I was wondering if that was my problem. I made sure they were All gluten-free. I was just in the hospital for pain this week it is not getting any better or letting up. I am so lost. I am about too just eat what I want since either way I am not getting any kind of relief. I am scared out of my mind what to do.

MyMississippi Enthusiast

Since you were just in the hospital for this, did they not do the Upper G.I.'s, lower G.I. x-rays ?? I would see a good gastroenterologist if you haven't already.

And don't worry til you know you have something to worry about. Anxiety makes EVERYTHING worse.

:)

kbtoyssni Contributor

If you've been gluten-free for a while, eating four pieces of bread the day before a scope isn't going to get you a positive result. I've read different thoughts on how much gluten you have to eat to get a positive test, but most say 4 servings a day for at least 3-6 months to even hope to get a positive. Since you've been gluten-free for nine months, I'd guess that your villi are mostly healed and would take a long time of eating gluten to show the kind of villi damage you'd see in a scope. Do you feel at all better? I see no reason to do this just for your doctor's curiosity.

isiskingdom Contributor
If you've been gluten-free for a while, eating four pieces of bread the day before a scope isn't going to get you a positive result. I've read different thoughts on how much gluten you have to eat to get a positive test, but most say 4 servings a day for at least 3-6 months to even hope to get a positive. Since you've been gluten-free for nine months, I'd guess that your villi are mostly healed and would take a long time of eating gluten to show the kind of villi damage you'd see in a scope. Do you feel at all better? I see no reason to do this just for your doctor's curiosity.

I am thinking about just eating what I want I only have one life and it is not going very well right now. I am so depressed and so unhappy. the doctors are so clueless and just seem to make me feel worse. For being gluten-free 9 months I should feel some kind of change by now.


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.

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

      IBS-D vs Celiac

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

      IBS-D vs Celiac

    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. - 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.

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

    • Total Members
      133,338
    • Most Online (within 30 mins)
      7,748

    Erica Johnson
    Newest Member
    Erica Johnson
    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
      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
      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
      @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?
×
×
  • 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.