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Now gluten-free - Now Pain/nausea
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Diagnosed by positive biopsy for intestinal damage, blood tests (taken after) were negative, been on a gluten-free diet for about 8 weeks - not even eating out at all - now I have major pain in upper stomach area and constant nausea, vary with intensity (still no vomiting). I had no celiac symptoms before except for major anemia (3), but after doing 4 iron infusions (iron up to 114), I have the constant pain and nausea. Doctor (who's on vacation for 2 weeks) sent word through the nurse to take Miralax and Pepcid. I'm having a very hard time eating. I know eating is kind of important - should I take pepto or something to coat so I can eat? Any ideas?

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Could you please describe the diet you've been following? What exactly do you eat during the day? Perhaps that would shed some light on this mystery, and I know that many of us here would like to help you. Also, what supplements are you taking?

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Could you please describe the diet you've been following? What exactly do you eat during the day? Perhaps that would shed some light on this mystery, and I know that many of us here would like to help you. Also, what supplements are you taking?

Before the pain...

breakfast: typically (1) grits with fruit, (2) gluten free waffles, cottage cheese, fruit, or (3) rice chex with almond milk

lunch: (1) salad - spinach/greens, (2) Amy's gluten free frozen vegetarian meal, or (3) gluten free rice wrap, mushroom/rice patty, spinach & veggies

dinner: (1) salad - spinach/green, (2) Amy's gluten free frozen vegetarian meal, or (3) rice/vege pasta salad

snacks: Greek yogurt, home-made gluten free ice cream, Larabar bars, fruit

drinks: water, almond milk, chai tea w/ almond milk, iced tea

Supplements: vitamin D, multi-vitamin

Doctor didn't even give me a plan to follow. Most of the info I have is from celiac.com, books or other website information. I saw a nutritionist who knew much less than me.

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Okay, my personal suspicion is that you might be sensitive to soy. For me, that means lots of digestive pain...to the point that I always think I have appendicitis and need to be driven to the hospital emergency room (first time that I ate it, that's exactly what I did, too).

Were the gluten-free waffles Van brand? If so, they use soy flour (which is crazy if they're trying to target the celiac population). Amy's tends to use a lot of soy in their products. too.

I noticed that you are depending rather strongly on gluten-free processed foods. This is very common for newly diagnosed celiacs; however, it's not the best approach for healing. Processed foods contain a lot of stuff that can make you feel ill (such as xanthan gum, guar gum, soy, etc.). Therefore, we generally advise newly diagnosed folks to eat only natural foods; e.g., fruits, vegetables, rice, potatoes, nuts and nut butters, meat, and dairy (if tolerated). There are easy casseroles that can be prepared in a slow cooker that can feed you for several days. Simply augment with a salad with oil and vinegar, a potato, or gluten-free pasta. It's very important to consume healthy fats, too, because they'll help you digest fat-soluble vitamins. Nuts, nut butters, and avocados will help you in that regard.

Hope you start feeling better soon!

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I agree. Too much processed food & soy. Soy kills me. Take it all the way down to very simple stuff & those salads --- use your own oil & vinegar. Salad dressings, even gluten-free ones are generally heavily dependent on soy. Better to simply use wine vinegar & olive oil. Check the ingredients on the almond milk too. It might have soy in there &/or carageenan which is a kelp product & could possibly be causing some distress at this point.

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There are several possibilities which are common, such as issues with dairy or soy. I would also wonder if your gallbladder is giving you trouble, since upper pain and nausea are very common, indigestion and gas as well. It is not always severe attacks from a stone, you may have general inflammation of the gallbladder which can leave you feeling that way a long time.

Or, you simply have not healed enough.

Keep a food diary and see when the symptoms are the worst.

Also, I can't do gluten free grains, processed gluten free foods. I stick to whole foods, it helps many people.

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Thank you so much for all your suggestions. I will try whole foods - I'm ready to start with one item at a time, will get back to the journal and monitor reactions. All suggestions are much appreciated!

DJ

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    • Mnoosh,    Can you give us a link to the article you read about the increased risk after being diagnosed and maintaining a strict gluten-free diet??       IMO,   You are over reacting to a misprint or most likely a misread article.
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    • Take a deep breath and calm down!    The incidence of cancer with Celiac Disease is rare.......it can happen but the vast majority of people never have that experience.  You may have somewhat enlarged lymph nodes due to inflammation from undiagnosed Celiac but that will all calm down and go away once you get going on the diet.  Believe me, there are many of us that have things happen during the diagnosis and early recovery period and everything turned out just fine.  There is an elevated risk for some cancers with Celiac but that risk goes back to that of the general population after a couple of years on the gluten-free diet. I cannot remember the exact time frame but it is somewhere between 2-4 years, I think.  So many of us went years without a diagnosis and when it was all figured out, we have gone on to be healthy with little complications.  Really...do  not worry about this.  Concentrate on learning all the ins and outs of this disease and how to live gluten free happily.  We are here to help you and guess what? The diet is not as bad as some make it out to be. Many things can be made gluten free and are every bit as good as their gluten counterparts. The diet may not be convenient but it is not hard. I would not lie to you!   
    • Well....one common symptom that most celiacs have when they are diagnosed (or undiagnosed) is anxiety.  So, there is a risk of cancers, but science has demonstrated that that risk goes down on a gluten free diet (if you have celiac disease).  In goes down to the same risk as those without celiac disease.   I kind of was a basket case.  I drive my family a bit crazy because I was anxious.  I felt a bit stupid too.  I guess I had a little brain fog going on too.  All that resolved after I healed. Welcome to the fourum.  Read our Newbie 101 thread under "Coping" (pinned at the top of the page) and learn about hidden sources of gluten and cross contamination.  I think most of us do not worry about cancer. We mourn the freedom to eat anything anywhere!   I did not have swollen lymph nodes, but I am sure others have and they did not have cancer.  Hopefully, they will chime in and set your mind at ease.  If not, you can search for "lymph nodes" at the top of the page (little magnifying glass).  There are lots of members with the same issue!  
    • I was recently diagnosed as having celiac and to be honest the part I'm having the most trouble with isn't the change in food or lifestyle. I'm really upset about what I've read about the risk of cancer increasing with celiac disease. I think this is playing into my fears because I currently have lymph nodes all over my body-my Doctor says they are not considered swollen or concerning, but I don't usually feel nodes. The lymph nodes and horrible diarrhea for the last 3 weeks were what got me into the the doctor for lab work. My blood work came great so I'm wondering if anyone else experienced lymph nodes reacting when they found out they were celiac? Also how do you deal with anxiety surrounding the increased risk of cancer? Thanks!
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