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Self Discovery And Post Diagnosis Question

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My journey with a gluten intolerance started 8 years ago when I was 16, and hit rock bottom about 2-3 years later. I went to several doctors, which told me a different finding every time: chronic fatigue syndrome, adrenal exhaustion, IBS, reactive hypoglycemia, "nervous stomach," anemia, depression/anxiety, NORMAL, vitamin deficient, and even mono (which was misdiagnosed). I knew I had all of these things--except normal, but wanted to know what was causing all of them. To me they were just a list of my symptoms and not the root of the problem. So I kept chugging on with life, missing the max number of days in college, suffering from extreme dizziness and fatigue, vit D, C, K, B12, selenium and manganese deficiencies, constant D and C with severe abdominal cramping that would have me in tears, and the list goes on and on and on.

So last January, through keeping an intuitive mind and researching, I felt like food was the cause of all of this. What food though, I had no idea! So I decided to sign up for a food detox program with a local chiropractor that lasted 3 weeks, and included only chicken, fish, rice, most veggies and fruit. At the end of the 3 weeks we started gradually adding each food group back in, analyzing how each made us feel. I went through major withdrawals during the first week of the detox - craving sweets, breads and pastas horribly! After gradually adding everything back in gluten, dairy and eggs all disagreed with me. Gluten being the absolute worst. I cut them all out of my diet. My doctor did a blood, stool and saliva panel to see what was going on right after the detox, and the results showed a positive for gliadin antibodies in my stool, low RBC and hemoglobin counts, low cholesterol, vit D, B12, selenium and mangnesium levels, as well as very low digestive enzyme counts. She sent me home with vitamins, and told me to stick to my, basically paleo, diet.

I did, and now a year later I am feeling *almost* back to normal again. Every issue I had has subsided or gone away completely! I don't know if anyone else has had this issue after going gluten-free, but my periods have become very irregular and light, and still low libido (and I'm 24, and happily married!!) I went back to my chiropractor/nutritionist for this issue and she looked at my previous bloodwork. We are working with my endocrine system with herbs and glandular supplements right now. She suspects celiac disease, but since I have been gluten-free for so long it probably wouldn't be logical to test for it. Has anyone been tested for it after a year of being off gluten (with some cc here and there) and shown a positive?

I have enjoyed reading everyone's success stories after their discoveries with gluten, and it's so nice to know that we have a place like this to express our frustrations, thoughts, and journeys. Thanks for "listening" to mine. :)


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I was scoped and tested after seven months gluten-free and all was negative, even with what my doc called some of the best celiac 'scopers in the country.


So getting a positive diagnosis after so long would be extremely rare I think. You could always get the gene test, which doesn't require eating gluten and can *help* rule celiac in or out, though not definitively.


You can also go back on gluten for the tests, or just keep up the good work and stay healthy. I do understand wanting a diagnosis, believe me!


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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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