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Celiac Disease - Recovery Support

It's been a while since I had the energy or time to sit down and focus on writing or blogging, but I'm back. I also find it interesting, from a physiological perspective, that after being gluten poisoned two months ago to the day and being so inundated with sickness, pain and trying hard to feel better, along with doing more Celiac research and being so focused on my stomach, that I seemed to have needed a little break from "all things gluten free." I think that sometimes living with a chronic illness makes us much more empathetic to others needs, but in this particular instance caused me to become a bit more introverted and anti-social, just trying to salvage any and all extra energy I had, in order to "get back to normal" (whatever that means!) and back into the land of the living.

I wanted to express my sincere gratitude to so many of you who posted comments both on this site and my blog, leaving behind words of encouragement, support and many, many useful tips/products that I was scribbling down and running to the health food store to find.  I am truly grateful for knowing that you are all out there...somewhere, and filled with great empathy for others. I am also taken a back by the stories of great struggle I have received from many Celiacs and undiagnosed folks, as well. It's so hard to believe that in this day and age, Celiac Disease can still wreak such havoc with so many and
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can go undiagnosed for so many years, leading to major health issues that go above and beyond the small intestine's villi.

I encourage any and all of you out there who are struggling with stomach issues of any kind, to impress upon your doctors the great importance of being tested for Celiac Disease...and if they appear to be non-responsive with a glazed look in their eyes, PUSH the issue. We must be advocates of our own bodies and health.  Educate the doctors, if need be, but don't let your issues be dismissed. Given the vast number of unknowing Celiacs just waiting for a diagnosis, I pray we will reach a point in the very near future when this disease will receive the necessary attention it's so deserving of.  

In the meantime, here's to all of you terrific and AWARE Celiacs out there, sharing your helpful bits of information and support, while educating all those who cross your path.

Here's to all of you!

As always, Celiac.com welcomes your comments (see below).

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1 Response:

Mary Nock

said this on
30 Jul 2012 3:37:08 PM PDT
I've been a celiac for a few years and cheated on my diet. Now I'm serious about getting back into shape but I have a big belly. Will it ever go away?

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Hi Ahhhnold (is that like Shwartzenegger?! ), I am also waiting for my endoscopy. In the meantime, the people on this message board suggested that I request the celiac antibody panel to be drawn. Do you know if that was included in your blood work? If not, you can ask your primary care doctor to order it while you wait. That might shed light on just what's going on in your body. I had mine drawn yesterday and am waiting for the results, but they typically can be back within a few days. Why not give it a try?

I know what you mean. On one hand, I don't want celiac disease, but on the other hand, it would be a "fixable" problem that would explain so many of my health problems... all the way back to age 11, honestly! From my understanding, from the very nice and knowledgeable people here, only one test being flagged high counts as a positive or potential positive. Letting the GI specialist know this means that they will (should) take extra care when doing and endoscopy and taking samples for biopsy. Good luck! I hope you get your answers!

A protein in corn that can be utilized by itself as a thickening agent or extracted in some cases to be used as a protein additive in highly processed foods like some process meats, gravy, sauces, etc. More often found in pet foods. Not related to wheat gluten or something the typical celiac needs to worry about. Me on the other hand am highly allergic to corn, if you have the same thing avoid it, along with modified food starch, vegetable oils, vegetable proteins, (these mixes normally contain corn) and several other processed forms along with the obvious corn starch, corn syrup, corn, masa, corn flour, maize, etc. Damnedest thing, they now often make biodegradable bags from corn starch/corn gluten, same with some new disposable ware....found out about the bags after breaking out in a rash from one I got at a health food store......

I'm 3 weeks away from my EGD and Celiac biopsy. I wish it was tomorrow. I started having stomach pain a few months back, had ultrasound, Bloodwork, H-Pylori test. Ultrasound normal, blood work normal, H-Pylori test negative, diagnosed with gastritis and given Nexium. It went away completely for about 3 weeks then came back with this constant belching, when I say constant I mean like sleeping 2 maybe 3 hours at night, the stomach pain would kinda come and go but the belching was non stop. Finally got referred to a GI specialist. While waiting on my appointment I decided to see if it could be an intolerance. First went dairy, no help. Then finally gluten. Within a week I was much better. Finally relief. I saw my doctor told him the diet was helping, he ordered an EGD and Celiac biopsy. But since I saw him a week ago I feel like I'm getting worse again. So yesterday I ate gluten free waffles and had a horrible day, so much gas and belching all day. I couldn't understand, so I looked at the box and found it's got soy. I read that people who have Celiac have trouble with soy as well. So today I've been, gluten, dairy, and soy free which mean I can't eat crap. But I've felt much better today than yesterday. In the mean time I'm curious, when they go in with the scope and do the intestinal scrape for the biopsy, how long do you have to wait for results? I'm so ready to do these tests and get some answers.

Going to suggest a whole foods only diet, no process foods or dairy for now til you start healing, Many of us suffer from deficiency issues as mentioned before, common ones are Magnesium, B vitamins, Iron, Vitamin D vitamin d E, folate, the list goes on. I really do suggest starting with magnesium in the form of Doctors Best or Nature Vitality Calm, the doctors best is easier on the stomach while the calm seems to be more effective if you can deal with it (magnesium Citrate is harsh on the stomach and can cause D) I also suggest a blended supplement for b-vitamins like Liquid health Stress and Energy and the Neurological Support from the same company, 1 tbsp each 2-3 times a day works wonders for energy. You might have to look into additional supplements you might be low in and for this I suggest talking to a dietician and getting tested to see about your levels. As for pain and suffering normally you get over the withdrawal and healing starts after 2-6 weeks on a strict gluten-free diet that means no contamination or cheating. I suggest replacing most cooking appliances, cleaning everything, using freezer paper for a prep surfaces, new pans, cooking utensils, and use new liners/organizers in your drawers. Power scrub your oven and run on a cleaning cycle, same with fridge/freezer. Got to get rid of every crumb and residue there is. I suggest tossing any baking dishes with scratches, cookie sheets, roasting pans and getting new ones. Lining things with foil when cooking helps, New toasters is a must. When I started out I did so with just a toaster oven, microwave, and combo rice cooker/steamer/crock pot. Did roasted veggies, steamed dishes, stews, and got a bunch of microwave cooking ware like omelette makers, etc so I could cook safe gluten-free meals for myself. Later I slowly got new pots, pans baking supplies, utensils etc.