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Soooo Confused! Pain!


Juicylove1228

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Juicylove1228 Newbie

Hey Everyone :D

Well, I have been lurking around here for a while... and I decided to ask for some help here... (like many do here!)

I don't know if I have Celiac's.... I did a blood test for it and it came back negative! I know previous to the test, I had been watching what I was eating and doing my best to stay away from general wheat products... so I'm guessing by all the threads, that it is possible that is the reason it came back that way.. but here's my story in a nutshell!....


  • 4 years ago, I got diagnosed with IBS after it seemed I was always averaging about 6-7 days of constipation! I et severely bloated!! I had been like this for years it seemed... she said I needed to up my intake of fiber, passed it off as IBS (as mentioned) ...

    Fast forward 4 years, i start taking Alli to help get ready for my wedding... and eat a LOT of wheat... I start eating nothing BUT pure wheat products to help with my weight loss! I did this for about 7 months before getting married!

    I got married in November... 2 weeks after getting married, I noticed that I was getting neasous after eating! I stopped taking the Alli ... but was still eating wheat! i thought I was pregnant! but it was way too weird and way too early to even consider that.... i was sick like this for about 4 weeks.

    Symptoms (pain!!!) worsened... only 1 hr after eating, I would get really bad pain in my upper abdomen (usually upper right below the rib cage)... went to the dr, didn't have insurance so he said he'd give me a Prev Pack for stomach ulcers!

    Did the prev pack over christmas week of 2008.... started feeling better toward the end but never really felt "normal"...

    2 weeks after taking prev pack, symptoms came back 10x worse!!!! I was in so much pain after eating I wanted to KILL MYSELF!!! I don't wish this ON ANYONE!!! I went to ER TWICE in one week because the pain wouldn't ease up!!! i was screaming on the floor in agony after eating only a microwaved plain potato!!! they didn't do anything for me but give me a bigger stronger dose of the prev pack!!

    Got insurance, went to an uninterested dr, he did a CT scan, endoscopy (only stomach... didn't go further down to biopsy the small intestines) and a gall bladder ultra sound... everything was normal!

    EVERTHING IS NOT NORMAL.... (jerk) (that's my diagnosis! basing it on how I feel!) ... during this month of feb/march i didn't eat anything... not knowing what this was about.... mom's friend mentioned her daughters went through the same thing and they had a wheat allergy!

    Go to another dr in early march.... she wants to do another endoscopy to test for Celiac's.... did a blood test, came back normal but I had started eating nothing/and DEF no wheat about 3 weeks previous to blood test

    still haven't gotten the endoscopy done... (insurance issues with getting it done twice).... but i'm still experiencing pain after eating just not nearly as bad! ... i had been really good about watching what i was eating (no wheat.... ) and i felt better.... started eating what i wanted and symptoms came back it seems! so i've been watching it AGAIN and every now and then I slip! I ate peanut M&M's today (easter present! :P ) and about 1 hr, i was in pain! i ate grilled chicken about 5 hrs later, and i was in pain after eating that! i feel like i damaged my stomach with the candy and now it has to heal!

some days i'm okay, if i'm more strict without eating anything with wheat and if i eat bland food, i seem to be ok! it takes about 3 days to heal after eating something "bad".... my stomach will burn and burn for a few hours! does this seem like a symptom?!?!

Any help would be greatly appreciated... i just don't know if what i have seems like a wheat/gluten allergy!


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RiceGuy Collaborator

Welcome to the board! I'm sure you'll get plenty of helpful advice.

Well, your symptoms could be from gluten, either an intolerance or Celiac. At this point, it seems logical to avoid gluten at least until you feel better. You may also find it helpful to avoid dairy, since the intestinal damage so often makes it problematic. Stick with plain veggies, some fruits, and other easy-to-digest foods. Avoid processed foods. Take it slow. Your body needs a break. A chance to heal.

You may also find it helpful to take some supplements. Celiac often leads to deficiencies in B vitamins, certain minerals such as iron, magnesium, calcium, potassium, and other nutrients. Watch out for gluten in supplements too!

If you haven't already done so, check the ingredients of your dish soap. Avoid scratched pots and pans, wooden utensils, the toaster, cast iron pans, and anything that has a surface which gluten might cling to. For example, stainless steel and glass work well.

Also, check your shampoo, skin/hair care products, cosmetics, etc for gluten ingredients. When in doubt, throw it out.

I hope you feel better soon!

ang1e0251 Contributor

Although there is nothing wrong with peanut M & M's, nuts can be hard on a damaged system. You may want to avoid them until you heal a bit. The grilled chicken sounds safe, right? But if the grill was not cleaned first it could have been cross contaminated. Or if your cook used the same utensil to handle your chicken as some glutened meat, again CC.

I know it's kind of mind boggling. There's just so much to remember. But if you follow riceguy's advice and start out simply, it will all get easier. I promise.

GFinDC Veteran

The M+Ms probably have dairy in them, which could be a problem for you. Lactose intolerance seems to be common among celiacs. For that matter it is not uncommon among non-celiacs. The blood antibody tests are not 100% accurate, with some false negatives (about 30%) possible on some tests. There is an article on the main site here about testing. www.celiac.com. There are I think 5 different antibody tests they do. Maybe your doc could give you the test results and someone here will probably be able to interpret them.

  • 2 weeks later...
Juicylove1228 Newbie
The M+Ms probably have dairy in them, which could be a problem for you. Lactose intolerance seems to be common among celiacs. For that matter it is not uncommon among non-celiacs. The blood antibody tests are not 100% accurate, with some false negatives (about 30%) possible on some tests. There is an article on the main site here about testing. www.celiac.com. There are I think 5 different antibody tests they do. Maybe your doc could give you the test results and someone here will probably be able to interpret them.

hi! Thanks for the responses everyone.

I have given up wheat for as many things as I can think of, I do not know how sensitive I am if at all! I just know that I've felt so much better since giving it up.

Corn syrup is damaging my system right now, I know it. Does anyone else have any problems with this?? I am certain that is why my stomach has been bothering me (pain) for the past 5 hours. (subtle pain, enough to make me uncomfortable)

I feel like certain things bother my stomach... things that are hard and rough to the digestive system. (such as peanut M&M's)

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    • knitty kitty
      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
    • Trish G
      Thanks, that's a great addition that I hadn't thought of. 
    • trents
      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
    • trents
      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
    • trents
      Another great fiber option is dried apricots. Four of them give you 3g of fiber and I find they don't produce all the gas that some other high fiber options do. They taste good too. Costco sells a large bag of them that are labeled gluten-free so you don't have to worry about cross contamination issues like you might in bulk grocery settings.
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