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Does This Sound Like Gluten Intolerance Or Celiac Disease?

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In February I decided to finally seek medical attention for symptoms I've been dealing with life long (i.e., bloating, constipation, flatulence, chronic fatigue). However, it wasn't until this year I began to get pains in my abdomen. Initially, the lower left quadrant then later the left flank. The pains seemed to coincide with the foods I ate, specifically how indigestible they were (i.e., nuts, raw vegetables, bran cereal). The first doctor was quick to suspect a food intolerance, specifically wheat and lactose, based on my history and family history. When I was younger I often had GI upset with diary products and the same symptoms are shared with one of my older siblings. So, I was told to stop eating wheat and simply use Lactaid drops from then on. In addition, he scheduled me to see an allergist in April.

After seeing the allergist, I tested negative for any allergies and was sent off for blood work (IgE, TTG, etc.) along with stool, urinalysis, and a couple breath tests (H. Pylori and lactose). Unfortunately, I had been off the wheat for a couple months by then and my test results were all negative. I was advised that I probably "just had IBS" and could see a GI specialist in July. Since the pain in my abdomen had continued, my boyfriend advised me to seek a second opinion from his GP. Unfortunately, his GP's diagnosis was that my symptoms were entirely psychosomatic and I just needed to eat more All Bran, Metamucil, and Dulcolax. Suffice to say, one day of this recommendation was the worst experience ever. It felt like shards of glass cutting through my intestines along with bloating from the fiber supplement (fermentable fiber).

Searching for answers, I began to read up on IBS (i.e., Heather Van Vorous books, FODMAP diet, FructMal) and it seemed like nothing was working. Sometimes my symptoms improved, other times it worsened. It wasn't until I ran out of oatmeal that I noticed a change--I began to feel full after my meals. Typically after every meal I still feel hungry for some reason, despite consuming hundreds to thousands of calories each meal. I never seem to gain weight (5'3


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Yikes. I had so many of these:

Mysterious bruising on the body (i.e., legs, arms, stomach)

Raccoon eyes

Sticky, floating pale stools

Joint/bone pain (prevents sleeping at night)- this was HORRENDOUS

Cold hands and feet (intolerance to cold)

Extreme fatigue (14-16 h/day)

Panic attacks/anxiety (diagnosed)

It's hard to say where you may fall in the spectrum. Some Celiacs have negative blood work and positive biopsies, some have positive blood and negative biopsies, some people have neither but heal on a no-gluten diet.

If not eating gluten makes you feel better, then I say go for it, especially if you have no intention of getting the endoscopy done.

Good luck!


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I have been wheat free for a long time. This post just reminded my that the times I went to Subway I felt like my "food" was a brick in my tummy. When it was time for the next meal; I felt as if I had just eaten.

Do others feel as if your body doesn't break down the food if gluten is in it?

Gross, but true.

No wonder our bodies get goofed up. I remember a time during my pregnancies in which I could vomit hours after eating and it would come up looking unchanged. When I mentioned it to doctors they would say that is good, atleast some is getting in. Was it?. Well, I am still here.


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I had a lot of the same neurological symptoms as you. I used to have constant brain fog, excessive sleepiness, lack of concentration, along with being easily overloaded by sensory stimuli. I'm an OT and I'm convinced there is a link with food allergies/intolerance with people diagnosed with Autism.

However, I noticed a significant difference in my daily life interactions once being on a gluten free diet. It's amazing. I am less anxious, more able to tolerate excessive auditory/ visual stimuli, my concentration and memory have improved, and my ADD is no more.

You know your body better than anyone else. If being gluten free works, stick with it. Good luck!


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Honestly, it could be either, and without testing you can't know for sure. If you really want a better idea, you could do genetic testing to see if you have the genes for Celiac. If so, it would probably be safe to say it is Celiac.

Personally, I would treat it as celiac disease and be vigilantly gluten-free for life. Clearly, gluten is harming your body, whether it is causing an autoimmune response yet or not.


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    • 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.
    • 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?
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