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Starting To Regress

3 posts in this topic

Hi all!

I've been having a lot of trouble lately with pain returning in my stomach. I was diagnosed in March of 2010, and I was really improving on the gluten free diet (4 months gluten-free).

However, lately I'm having lots of pain at night and it only seems to get worse each passing day. Now during the day I have this constant ache. I'm almost certain it's a gluten problem, but I watch my diet very closely, checking labels, etc... The only place I could be getting it is from cross-contamination, but why is it all of the sudden effecting me so badly. And how do I avoid it if I react so badly to it? It's almost impossible to avoid it all, especially living with a family member who has IBS and eats gluten like it's going out of season. I also have a handful of people who cook for me who are extremely cautious, but could be cross-contaminating. I've begun to lose my appetite again because I'm afraid of anything I put in my mouth.

Any helpful ideas, suggestions would be great.


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I got more sensitive to smaller amounts of gluten as time went on. I have read about others too. Can you do all your own cooking so that you can be really careful yourself? Some of us have problems with grain cross contamination. Some of us have problems with things made on shared lines. It sounds like you need to clean up your diet a bit. Maybe first try cooking for yourself. If that doesn't do it, then avoid the shared lines, then the shared facilities, then processed grains. I hope you feel better.


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If you had blood tests before, you should have them again--to compare and see if you're still getting gluten in your diet. It could be from shared cooking equipment, products that were cc'd in factory, pet foods, beauty supplies/shampoo, etc., craft or home improvement material, drinks (like flavored coffee), medications and supplements--if you're still getting gluten, you have have to look outside of food to find other sources.

It's common to get more sensitive in the early stages of the diet. If you continue to have problems, you'll need to revisit your doc to discuss other things (it may not even be celiac-related.) It may also be that you're reacting to other foods (other temporary allergies and intolerances will crop up as you heal.) In that case you may want to have testing done to rule out these.


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    • 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.
    • Hi Weary, I think what you are talking about is refractory celiac disease.  Refractory celiac disease is when the immune system does not stop attacking the gut villi even in the absence of gluten for a long period of time.  I don't know a perfect treatment for that condition, but sometimes people use enteral (tube) feeding.  Refractory celiac disease is pretty rare so not many members have direct experience with it.  I posted a link to a thread started by glutenwrangler who used enteral feeding. I think in glutenwrangler's case they thought he had refractory celiac disease but eventually were thinking he had eosinophilic esophagitis.  But glutenwrangler hasn't been around the forum for years. I've read about people with Crohn's Disease using low dose naltrexone as  treatment. I think if you have a serious food problem doing the Fasano type diet for a year or more might make sense.  Maybe give your immune system more time to settle down?
    • Dear Weary, I am so sorry that this is happening to you!  😟.  I get the OCD thing.  Are you sure your meds are gluten free (dumb question, but had to ask)?  Have other AI issues been ruled out?  Did they do a follow-up endoscopy/colonoscopy/pill camera?  
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