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Help Pleaase

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After 5 years of going to DR to DR, I dx myself with celiac or Gluten sensitivity. My symptoms fit it so well.

Abdominal cramping/bloating. Abdominal distention to the point of being painful. Constipation, Edema, Energy loss, Fatigue. Flatus, Mouth sores or cracks in the corners, Muscle cramping (Especially in the hands and legs) I have terrible leg cramps at night. Skin (Very dry) . Stools (Hard, Small, Foul smelling. Tooth enamel defects. Weakness, Depression, Unable to concentrate, Iron-deficiency anemia,nausea, heart burn, bone pain, abnormal menses, acid reflex, starting to get arthritis in my thumbs, I can go on. If I go gluten free, the systems abate and I feel human again, My legs stop almost the burning feeling, so do my hands, I don't feel so dragged out.

So I go to my DR and he ordered these tests, I have been 80% gluten free for 5-6 weeks now. Yes i cheat and its denial, and as soon as I cheat i am sick, heart burn, nausa,painful cramps about an hour later,

I am over weight (300) and i dont have the diarreha

this was i received from the DR

my glucose fasting is 14H (65-105mg/dl)

Potassium 4.8 (3.5-5.3)

Cholesterol total 236

LDL chol 156

hemoglobin 10.l

hemacrit 32.2

mcv 65.4

mch 20.3

mchc 31.

rdw 18.9

platelet count 484H


mod. anisocytosis

slight hypochrochromasis

slight microcytosis

mod. elliptocytes

platelet estimate increased

vit. 12,folate 741

tissue transglutam AB IGA <20 (<20 neg)

gliadin AB (IGG,A

Gliadin AB (IGA <20

Gliadin AB (IGG) pending

hemoglobin A1c 6.0H %

tissue transglutam AB IGG 3 (<20 neg)

quest labs.

Now the DR says I am not either celiac or gluten sensitive.

but I clear up and feel so much better when i am gluten free,

what could be wrong ? shouldnt I listen to my body, my dr laughed when i said that. He wasnt concerned about the burning feet, hands (its so bad sometimes i lay in bed crying, yes i know its time for a new dr. but what do i do now

Should i do the endolabs?

is being gluten free 80% of the time for 5-6 weeks enough to change the blood results, as i get older i am finding i am allegic to more and more food.

what do i do now



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Hi Sandi. It's clear that you have been gluten-free and therefore it screwed your work. In order for it to show up (if it will show up) you need to be full time on gluten. I would definately do However, if you feel better on a gluten-free diet you pretty much have your answer. Enterolabs will only confirm it and you do not have to be gluten-free for it to show up. Keep us posted.


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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.
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    • 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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