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Soooo Confused! Pain!

Juicylove1228

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Juicylove1228 Newbie
Juicylove1228
Posted

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
RiceGuy
Posted

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
ang1e0251
Posted

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
GFinDC
Posted

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
Juicylove1228
Posted
  • Author
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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      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      High DGP-A with normal IGA

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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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