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

Is Sugar The Cause Of Duodenal Iels? Thoughts Please!


livelaughlove3885

Recommended Posts

livelaughlove3885 Rookie

HI All, I'm really happy because i think i finally figured out my problem, after experimenting with foods for over a year.... the problem is SUGAR! I don't think i have the enzyme to break down sugar or simple carbs or something. Here is my story, maybe others can relate and it will help you. April 2012 get EGD, the finding is duodenal intraepithelial lymphocytosis, mild crypt hyperplasia, negative H pylori, negative NSAID usage, oh, and also the IELs were all along the tip of the villi (common pattern in celiac...it means your body is fighting something it perceives as an enemy, so it floods the are with leukocytes to kill it...only problem is the next step is destruction of villi, then you can't absorb nutrients). So anyone with this finding...next step is celiac panel and haplotype testing. I am negative for everything, so I do not have celiac disease. So the doctor says I don't know... you must just be sensitive to it so you can eat it but just not all the time. And that was that. I work for gastroenterology, and i see this all the time. It's not common to get this pathology, but of those that have this pathology, the next step is bloodwork and that is usually always negative for celiac.. so these people are just told "I don't know". Well, that is bull crap, and I am determined to find an answer. So anyways, i tried glutenfree diet for a month and felt really good (but i wasn't eating enough B vitamins looking back and also since i didn't like glutenfree stuff i wasn't really consuming sugary foods). Then i did dairy and gluten free for 2 months at the same time (cutting out all sugars pretty much, but looking back i was not getting enough B vitamins or calcium or vit D... big mistake). Then i just did the paleo diet, where you don't eat grains... I felt awesome! (but i did not eat liver so therefore looking back i was not getting enough calcium, B vitamins, vit D, magnesium, zinc). So i felt awesome paleo, but after a few months of that I started to not feel right. Felt really uneasy or anxious or something. I developed a muscle twitch in my lower eyelid that lasted 8 weeks all day long, then that stopped and only the area around my cheek, mouth, and chin twitched for a couple more weeks, then it just moved to all over body twitching and this feeling like my cheeks were being pulled on. If i toucched my forehead the twitching increased. Also, getting pins and needles all day long in my arms and hands. It must be a vit deficiency, i thought. So i examined my diet... not enough iron, thiamin, riboflavin, calcium, vit D, magnesium, C. So i started introducing wheat into my diet again (but whole grain wheat with no HFCS and 2 slices are not more than 5g sugar per serving) and i felt better and the anxious feeling went away. Also, i started eating dairy products again. Cheddar cheese and mozzarella i was fine with. But then a drank an 8 oz glass of milk and felt nauseous, burping, nonstop gas. Another time i ate a brownie made of wheat flour and same problem. Was it the wheat or dairy? I wasn't convinced because why would sometimes i react but not all the time. So then i started examining sugar, protein, fiber contents of foods. And i made a discovery... I can eat any dairy or wheat product as long as it has not more than 5 or 6 g of sugar in it. Anything more than that (brownie has tons of sugar, and an 8 oz glass of milk is like 17g sugar), and i will get a really bad headache about a half hour after eating it, will become practicially comatose, can't stay awake, my eyes roll around, will get a bad anxiety feeling, my heart will race if i try to force myself to stay awake, i will keep nodding off with no control over it, and feel very confused and out of it. Also, the next day after eating something high in sugar, i will break out in a folliculitis looking rash on my back, chest, top of shoulders, then it goes away in a couple days by watching sugar levels again. Also, my muscle twitching has greatly decreased since i have been eating more B vitamins and calcium. So this whole time, i think the whole problem was sugar. I don't think im diabetic (if anything im on the low side), and i don't think im hypoglycemic, but i do think i must not make the enzyme to break down sugar... it just sits in my like poison causing headache, confusion, fatigue, skin rash, major gas bloating, burping, nausea. ANd i also think this because when i was glutenfree still if i ate a glutenfree food high in sugar i would get the same reaction. So this whole time, over a year, i think it was sugar-related. I feel fine and awesome by eating every 2 hours small meals with not more than 5 or 6 g sugar per serving. ANy thoughts? Im gonna tell my doc this next week when i have an appt. He will probably think im nuts. 


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



Celiac.com Sponsor (A8-M):



w8in4dave Community Regular

Or he may just think your on to something. Great job!! You know when something is wrong. Just because "They" cannot find the problem doesn't mean it isn't there. Like so many Dr.s want to say. "It's all in your head"... you figured it out!! Good for you!! 

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. - Wheatwacked replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      34

      Blood results

    2. - Known1 replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    3. - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

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

    • Total Members
      133,414
    • Most Online (within 30 mins)
      7,748

    EBeloved
    Newest Member
    EBeloved
    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

    • Wheatwacked
    • Wheatwacked
      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine.  Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years.  Doctor recently said to not stop.  My 25(OH)D is around 200 nmol/L (80 ng/ml) but it took about six years to get there.  Increasing vitamin D also increases absorption of Calcium. A good start is 100-gram (3.5-ounce) serving of salmon,  vitamin D from 7.5 to 25 mcg (300 to 1,000 IU) but it is going to take additional vitamin D supplement to be effective.  More importantly salmon has an omega-6 to omega-3 ratio 1:10 anti-inflammatory compared to the 15:1 infammatory ratio of the typical Western diet. Vitamin D and Depression: Where is all the Sunshine?
    • Known1
      Thank you for sharing your thoughts.  I respectfully disagree.  You cherry picked a small section from the page.  I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on labeling issues or concerns with identifying these “ingredients of interest” on packaged food products in the U.S. “People with celiac disease or gluten sensitives have had to tiptoe around food, and are often forced to guess about their food options,” said FDA Commissioner Marty Makary, M.D., M.P.H. “We encourage all stakeholders to share their experiences and data to help us develop policies that will better protect Americans and support healthy food choices.” --- end quote Anyone with celiac disease is clearly a stakeholder.  The FDA is encouraging us to share our experiences along with any data to help develop future "policies that will better protect Americans and support healthy food choices".  I see this as our chance to speak up or forever hold our peace.  Like those that do not participate in elections, they are not allowed to complain.  The way I see it, if we do not participate in this request for public comment/feedback, then we should also not complain when we get ill from something labeled gluten-free. Have a blessed day ahead, Known1
    • Wheatwacked
      Here is a link to the spreadsheet I kept to track my nutrition intakes.  Maybe it will give you ideas. It is not https so browsers may flag a security warning. There is nothing to send or receive. http://doodlesnotes.net/index3.html I tracked everything I ate, used the National Nutrition Database https://www.foodrisk.org/resources/display/41 to add up my daily intake and supplemented appropriately.  It tracks about 30 nutrients at once.
    • Wheatwacked
      Hello @catnapt, That's so true.  Every person with Celiac Disease has different symptoms.  There are over 200 that it mimics.  Too many still believe that it is only a childhood disease you outgrow.  Or it's psychosomatic or simply a fad.  Idiots.  It's easy to get angry at all of them.   You just have to pick at the answers until you find the ones that work for you.  I too suffer from not being able to take the drugs that work for "everyone else".  SSRIs make me twitch ane feel like toothpicks are holding my eye open, ARBs cripple me.  Statins cause me intestinal Psuedo Obstruction.  Espresso puts me to sleep.  I counted 19 different symptoms that improved from GFD and dealing with my nutritional defecits.  I couldn't breath through my mouth until I started GFD at 64 years old.   My son was born with celiac disease, biopsy diagnosed at weaning.   So why are we the one-percenters.  Why, after being silent for so long, does it suddenly flare? There is the possibility that you have both Celiac Disease and Non Celiac Gluten Sensitivity.  NCGS was not established as a diagnosis until 1980.  NCGS is diagnost by first elimating Celiac Disease as the cause, and showing improvement on GFD.  Nothing says you can't have symptoms from both.  Wheatbelly: Total Nutrition by Dr. Davis was helpful to me. We come to the forum to share what we've learned in dealing with our own symptoms.  Maybe this will help someone. Speaking of which if you don't mind; what is your 25(OH)D vitamin D blood level?  You mentioned a mysterious Calcium issue. Vitamin D, Calcium and Iodine are closely interactive. It is not uncommon for postmenopausal women to have insufficient intake of Iodine.   (RDA): Average daily level of intake sufficient to meet the nutrient requirements of nearly all (97%–98%) healthy individuals; often used to plan nutritionally adequate diets for individuals You are a one-percenter.  You may need higher intake of some essential nutrient supplements to speed up repairing the damages.
×
×
  • 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.