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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Gluten Free Since Sept...but ... Still Sufferring
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9 posts in this topic

Hi! I am new to this forum. I am looking for advice. My dr completed a Celiac panel (bloodwork)on me back in June. the only test that came back positive (elevated) was my IGg was 13.5.

I went gluten free by Sept. 01 of 2012. for the first four weeks, I also went dairy free; at the time, dairy did not appear to be an issue so I have been back on regular amounts of it (maybe more than usual with the holidays and all...) but still very cautious for wheat/gluten. I was tested by endoscopy for celiac, thankfully, at this time,the test was negative.

Here`s the thing.. .. I feel right back where I was 6 months ago. Bloated, fat (feeling, i have gained about 10 lbs in the last month!) lethargic (again, too bloated feeling to workout, go to gym). My main symptoms are constipation, bloating, irritability, lack of energy (I am also borderline anaemic), and muscle/joint pain, sleep disturbances, increased anxiety, brain fog.

I strongly suspect there is more at play here. Could I also be dairy intolerant? corn? xanthan gum/guar gum intolerant?

I am waiting for an appt with the allergist (Feb?) and will go to a homeopath as soon as I can afford it (April,most likely); but in the meantime, where should I start??

I will mention, as well, I eliminated coffee for 5 mths (per dr order), but as I felt no different without it, have taken up the cup again, though, I found I felt ok with it black, but since resorting to the old regular (one milk or cream, one sugar) I feel terrible again.

I have determined that sugar (refined) is a bad idea, and I must avoid it whenever possible; but please, help me. I trust there are many who have travelled this road before me who can relate and guide me... I just want to feel like `myself`again.

Energetic, motivated, etc.

Where would you begin? what would you do first, tomorrow, to begin to feel better or find a cause for this misery?

Thankyou in advance to all who read this, and especially, to any who post.

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Honestly, i'd strip everything from your diet, and eat only a few 'safe' foods and then slowly add back. Also keeping a food diary helps.

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HI and welcome! Shadowicewolf has good advice there.

I would add patience to the recipe. If gluten is your problem, wise people here have counseled that healing takes time.

I've been gluten-free since July and am only now beginning to feel anything close to better. Maybe I was just too lazy to go through all the elimination diet stuff (I did keep a food diary tho), so I just kept eating everything except gluten and dairy because it seemed like no matter what else I ate, I was going to feel sick anyway.

For me, it has been a matter of hanging in there, because after all, our intestines are still trying to heal. Turns out none of the foods I was worrying about (corn, rice, soy) actually bother me.

Things are improving... slowly.

This is just my experience. Others have found that they do indeed have intolerance or allergies to other foods, so Shadow's advice still stands if you want to check that out.

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I sort of did that... not a FULL elimination, but quite restricted but i suspect not long enough. i was keeping a good food journal for the first few months,but again.. holidays right... life is pretty busy with four kids! I am just about frustrated enough to start over. The fact that I have been awake since 2 30 am is reason enough.

I have read so many `elimination diet plans`, and find the advice varies so much it is hard to know where to begin, for how long etc... can you suggest one that has proven helpful?

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Maybe try a Paleo diet for a while? It removes grains, some dairy, refined sugars. There are tons of recipes online and you may be able to get books at the library?

Please remember that healing is a slow process. You will have up and down days.

Keep a food log and note any symptoms.

Once you have done more healing you can add foods back in, one at a time.

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Any chance you are getting cross contamination? Old toaster, shared baking sheet, common condiments (like butter). For me, those were all things I hadn't given consideration too when I first went gluten-free and it didn't seem like it bothered me. The longer I was gluten-free, the more sensitive I became. I have my own condiments now, my own toaster, and I line bakeware with foil.

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Dont remove a lot of foods and starve yourself. I made this mistake and it further damaged my health and led to adrenal fatigue and hypothyroidism. Eat plenty of carbs/sugars, healthy fats and proteins. Eliminate foods slowly and cautiously, I would start with caseine (milk protein) and see if that helps. The reason I say this is if you starve yourself your metabolism will crash and you will get more food sensitivities such as I had

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That is what happened to me. In my case, I traced it to corn intolerance also. I found going gluten-free was easy, this is the best day/time in the world to do that, as more companies are careful to label things gluten-free. Its not the same with corn, there are many derivitves of it, hiding under other names, and it is used in/on nearly everything. Going on a clean unprocessed diet is not much help, because, for instance, fresh produce is sprayed with corn, meat processors use corn based cleaners.

Good luck finding your answer. You might want to look at corn next. Celiac and corn intolerance seem to go hand in hand.

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Any chance you are getting cross contamination? Old toaster, shared baking sheet, common condiments (like butter). For me, those were all things I hadn't given consideration too when I first went gluten-free and it didn't seem like it bothered me. The longer I was gluten-free, the more sensitive I became. I have my own condiments now, my own toaster, and I line bakeware with foil.

Actually, thes past couple weeks that has crossed my mind. I realy would like to get to a point of a wheat freeégluten free home...

I think that could very well be part of the problem. I have my own butter dish (well, my daughter and i share but she`s gluten free now too) I don`t use a lot of those things anymore anyway,but I was thinking that when i open a new jar i will separate a potion for our use only. My kids aren`t careful, hubby isn`t very careful. We use the same cutting board, dh likes to use the toaster for me for breads, where I (when I ocassionally eat bread that is) prefer to use the sandwhich press which can at least be cleaned. Maybe its time I go shopping and get some gluten free only items??

I have started to feel better this week, my energy is slowly climbing. I have determined chocolate, refined sugar, any carbonated drink; all are very bad for me.

I have been drinking mostly water and black coffee. Eating grapefruit, salads (with homemade oil, vinegar based dressings), chicken, beef, veggies. For carbs I have had sweet potato, carrots, some quinoa(also a protein I know), small amounts of oats, and just yesterday brown rice. I feel the bloating is subsiding, but overall water retension still higher than I would like. Due again to bloating and gas, I have avoided legumes, but find green beans troublesome and last night`s cabbage rolls were not such a great idea ;)

Also, I have reintroduced exercise to my daily routine, and some supplements (ACV, Flax oil, Iron and Vit D).

Thankyou all for you help thus far, there is so much to learn and think about; without being able to talk to others who have been through this, I don`t know where I would be!

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