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. - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

    2. - Scatterbrain replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

    3. - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

    4. - knitty kitty replied to Larzipan's topic in Related Issues & Disorders
      34

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,311
    • Most Online (within 30 mins)
      7,748

    EMP6543
    Newest Member
    EMP6543
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold.  Our bodies have difficulty absorbing and utilizing it.  Only 30% is absorbed and less can be utilized.   There's some question as to how well multivitamins dissolve in the digestive tract.  You can test this at home.  YouTube has instructional videos.   Talk to your nutritionist about adding a B Complex.  The B vitamins are water soluble, so any excess is easily excreted if not needed.  Consider adding additional Thiamine in the forms Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) or thiamine hydrochloride.   Thiamine is needed to help control electrolytes.  Without sufficient thiamine, the kidneys loose electrolytes easily resulting in low sodium and chloride.   We need extra thiamine when we're emotionally stressed, physically ill, and when we exercise regularly, are an athlete, or do physical labor outdoors, and in hot weather.  Your return to activities and athletics may have depleted your thiamine and other B vitamins to a point symptoms are appearing.   The deficiency symptoms of B vitamins overlap, and can be pretty vague, or easily written off as due to something else like being tired after a busy day.  The symptoms you listed are the same as early B vitamin deficiency symptoms, especially Thiamine.  Thiamine deficiency symptoms can appear in as little as three days.  I recognize the symptoms as those I had when I was deficient.  It can get much worse. "My symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell." I took a B 50 Complex twice a day and extra thiamine in the forms Benfotiamine and TTFD.  I currently take the Ex Plus supplement used in this study which shows B vitamins, especially Thiamine B 1, Riboflavin B2, Pyridoxine B 6, and B12 Cobalamine are very helpful.   A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial https://pmc.ncbi.nlm.nih.gov/articles/PMC10542023/
    • Scatterbrain
      I am taking a multivitamin which is pretty bolstered with B’s.  Additional Calcium, D3, Magnesium, Vit C, and Ubiquinol.  Started Creapure creatine monohydrate in June for athletic recovery and brain fog.  I have been working with a Nutritionist along side my Dr. since February.  My TTG IGA levels in January were 52.8 and my DGP IGA was >250 (I don’t know the exact number since it was so high).  All my other labs were normal except Sodium and Chloride which were low.  I have more labs coming up in Dec.  I make my own bread, and don’t eat a lot of processed gluten-free snacks.
    • knitty kitty
      @Scatterbrain, What supplements are you taking? I agree that the problem may be nutritional deficiencies.  It's worth talking to a dietician or nutritionist about.   Did you get a Marsh score at your diagnosis?  Was your tTg IgA level very high?  These can indicate more intestinal damage and poorer absorption of nutrients.   Are you eating processed gluten free food stuffs?  Have you looked into the Autoimmune Protocol Diet?  
    • knitty kitty
      Vitamin and mineral deficiencies can make TMJ worse.  Vitamins like B12 , Thiamine B1, and Pyridoxine B6 help relieve pain.  Half of the patients in one study were deficient in these three vitamins in one study below. Malabsorption of vitamins and minerals is common in celiac disease.  It's important to eat healthy nutrient dense diets like the Autoimmune Protocol Diet, a Paleo diet that has similarities to the Mediterranean diet mentioned in one of the studies.   Is there a link between diet and painful temporomandibular disorders? A cross-sectional study https://pmc.ncbi.nlm.nih.gov/articles/PMC12442269/   Nutritional Strategies for Chronic Craniofacial Pain and Temporomandibular Disorders: Current Clinical and Preclinical Insights https://pmc.ncbi.nlm.nih.gov/articles/PMC11397166/   Serum nutrient deficiencies in the patient with complex temporomandibular joint problems https://pmc.ncbi.nlm.nih.gov/articles/PMC2446412/  
    • Iam
      Yes.  I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy.  Numerous dental visits and several professionally made bite plates  did very little to help with symptoms
×
×
  • 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.