Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Soooo Confused! Pain!

Juicylove1228

Recommended Posts

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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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)

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. lizzie42
      - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Son's legs shaking

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin. He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her...
    2. trents
      - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified...
    3. trents
      - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you...
    4. Paulaannefthimiou
      - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Are Bobresmill gluten free oats ok for sensitive celiacs?
    5. jenniber
      - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks! i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me b...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,852
    • Most Online (within 30 mins)
      7,748
    Maud
    Newest Member
    Maud
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Bob red mill gluten free oats

      By trents · Posted

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      Disaccharide deficient, confusing biopsy results, no blood test

      By trents · Posted

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Bob red mill gluten free oats

      By Paulaannefthimiou · Posted

      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      Disaccharide deficient, confusing biopsy results, no blood test

      By jenniber · Posted

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.