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 marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    2. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    3. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    4. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    5. - marion wheaton posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,410
    • Most Online (within 30 mins)
      7,748

    Marilyn Gingras
    Newest Member
    Marilyn Gingras
    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

    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
×
×
  • 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.