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Is Sugar The Cause Of Duodenal Iels? Thoughts Please!


livelaughlove3885

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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. 


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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!! 

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    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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