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Is Sugar The Cause Of Duodenal Iels? Thoughts Please!

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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 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 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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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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    • I think GFinDC has some good suggestions for you & I know you don't want to hear this but I will ditto what he said about the Fasano diet. I think you need to be on it longer than 3 months. After all, in the trials he was part of, the diet was to be adhered to for 3 to 6 months. I think the majority stayed on it for around 4.5 months. Really, I think you should go back to it & do a minimum of 6 months but more likely 9 mos. to a year. I know it sucks. I know it's going to be a royal pita. But being sick is a royal pita that sucks big time. One thing you can do is to make home made bone broth. Ultra nutritious & helps heal the gut. Google how to make it. Roast the bones first though even if the recipe doesn't mention that. It will taste far better and be better.  Do you have a shared kitchen? Do you EVER eat out? Do you eat ANY gluten-free processed foods? Check your meds. {{{{{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}}}}}}
    • As for eating out, I have found anywhere in the UK that in even semi-decent restaurants I can tell them exactly what I want. Look through their menu and pick things you like and tell them what you want and how to cook it. Most decent chefs will like a change and a challenge and I have been pleasantly surprised with the help that they have given. After a while you will have list of decent restaurants that you can trust. Usually I ask for a rare staeck cooked in Corn oil or olive oil with boiled potatoes and non-buttered veg. If you starts thre the chef usually gives other suggestions but make sure he/she is well aware of basic coeliac gluten cross contamination in kitchen, esp deep fat fryers.
    • Hi plumbago, No, D is not a symptoms only associated with severe celiac disease damage, if that's what you are thinking.  Every time we ingest gluten the immune reaction is kicked off again, and the damage starts all over.  If we ingest gluten daily, the immune reaction never stops, and we end up  with significant damage.  If we stop eating gluten, the immune reaction will decrease over time, and the damage will decrease also.  Healing will also happen as well. The moral of the story is Stop Eating Gluten!
    • Hi Ken. I know how you feel. I am Coeliac (UK!) with multiple intolerances and it has taken me meny years to isolate exactly what the problem foods are. I cannot really advise you what to eat or to avoid as everyone is different but I can suggest you "go back to basics" - in other words absolutely no processed foods even those that are heavily advertised as Gluten Free etc etc - just have a good look at what is in them. Basic food, cooked from scratch is healthier and much easier to isolate foods that you may be intolerentto. I cannot eat: Gluten, including Oats, all dairy, eggs (whites are worse than yolks), soya (a real b---h), preservatives (phosphates, sulphates, sulphites -which rules out 99.9% of wines and most bottled drinks) and various veg/fruits including butternut squash, cashews, grapes, pears, leeks, Celery (sulphites) and artificially "smoked" meats and stock cubes (I keep all bones and make my own stock, free!). I now cure my own bacon (simple - belly pork with dry cure of rock salt and molasses/demarara sugar for 5 days in fridge) but stay away from all pre-packed sliced meats which are full of preservatives) and the only bread I can eat is Seattle Brown Loaves. Keep well away from "E" numbers and any foods that require processing in their production and beware of "Vegetable" oil which is usually soya. Use Corn oil, Ghee (salted butter melted in a pan, remove the scum which is the protein and you are left with a golden liquid) or walnut/coconut oils. Also beware of Crisps/Chips (USA term). Most are sprayed with some liquid prior to cooking and only one type does not affect me - Kettle Crisps/Chips, low salted only NEVER take artifical flavourings in any foods - hidden in E numbers. If I do eat any of the above the symptoms are basically the same, headaches, wind, tiredness, migraines and a feeling of "low" almost depression but not quite as bad. Can last for up to 5 days but usually 1/2. It is really the caveman diet - absolutely no fast foods. I can make myself a meal in a few minutes with anything I have in the house. I eat any meats, most veg (onions, carrots, garlic, peppers, potatoes, of course, green veg etc). A wok is good to have as is a pressure cooker for making stock out of bones. Menus: Breakfast, bacon, fried potatoes, onions peppers. Tea with Honey and Coconut cream (coconut a gem!) and Seattle bread toasted (best that way with "Pure" Sunflower spread) . Lunch: soup, toasts and meat of some kind. Apples, oranges etc Dinners: staples of potatoes, pastas (Gluten free of course), rice, meats, veg, fish. Never concern yourself with what you cant eat, concentrate on what you can and I enjoy cooking my own food and I can also prepare a dinner party and nobody knows it is designed for me! Best of luck, it is a change of lifestyle for the good. Excuse ramblings at times as I keep remembering things as I write.
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