Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

My Story, Looking For Opinions From You Experts!

LynneM

Recommended Posts

LynneM Apprentice
LynneM
Posted

Hello friends:

I've been researching here for a couple of months, this is my first post. I just would like to tell my possibly celiac story and get your opinions. I'll try to make it as brief as possible. I've always had headaches, always thought they were sinus related, but in the last year realized that they were migraines. They started getting worse and worse until they were almost constant. I thought they must be food related as nothing medical helped. First I tried stopping red wine ( a HUGE sacrifice! ;-> ), but that didn't help ( I was happy about that!). Then, in researching wheat allergy I stumbled onto gluten/celiac. What struck me were the symptoms that my mother had, and eventually died from. Here is a brief summary of what she suffered from, from childhood on:

Voracious appetite, no weight gain

"Thin" blood, bruises all over, cuts difficult to scab

chronic diarrea, mixed with constipation, (misdiagnosed as irritable bowel, see next entry)

internal bleeding (she almost died two times throwing up blood, two colonoscopies found no sign of irritable bowel, or anything else, they never figured out where the bleeding came from)

ITP- an autoimmune disease wherein the red blood platelets disappear

"Stroke" (misdiagnosed I believe- catscans revealed nothing, I think they were seizures)

dementia (did not have alzheimers)

loss of coordination, use of hands occasionally

difficulty keeping balance, walked like a drunk (she didn't drink)

nerve disorders, creepy crawlies all over her body

lifelong insomnia

depression/anxiety

This all culminated finally in renal failure, she was on dialysis for two years and passed away two years ago. (there was also extremely high blood pressure, and a couple of minor heart attacks but don't know if this is related to celiac).

So, this leads me to strongly believe that she was celiac. Now for me. I stopped eating gluten about 4 months ago, and my migraines disappeared immediately, along with chronic mouth thrush and canker sores on the roof of my mouth. So I suspect I'm celiac also, but when I discussed it with my doctor, she shrugged it off (because I haven't lost any weight), gave me a blood test which came out negative and said I don't have it. But I haven't had gluten in 4 months, so I suspect the test could be a false negative. I guess I just would like some feedback from all of you who have been dealing with all this stuff for years. What do you think? Thanks in advance!

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

Celiac.com Sponsor (A8-M):


2kids4me Contributor
2kids4me
Posted

You can be gluten intolerant and have effects from gluten.. if blood test was negative yet you have had great response ot gluten free then go with that.

My daughter used to get migraines too - horrible ones. None since gluten free.

Eating without gluten is just eating differently and having awareness of what you put in your body. Educate yourself and enjoy food without having headaches and canker sores . :)

Sandy

Kaycee Collaborator
Kaycee
Posted

It is just a myth that all coeliacs are skinny, because I know a few like me who have got weight issues.

Cathy

mama23 Newbie
mama23
Posted

I had headaches everyday for a year...the dr's had no clue of why...nothing worked to stop them.

They did go away in time.

My cousins headaches went away with a gluten-free diet. My daughters headaches have gone away with a gluten-free diet.

I also was always overwieght...eating a ton of food and STARVING. I only lost weight a few times when my body went into crisis from the gluten. I slowly lost my extra weight after being gluten-free.

I was a very abnormal (though from what I read there isn't really a normal celiac) celiac, overweight and constipated.

I don't think most dr's have a clue...I went to a GI paid over $300 out of pocket and he wanted me back on gluten (4 pieces of bread day! for a month!!) I had just been off gluten for 6 months and finally stabilized my weightloss at 92lbs.

My current dr told me "the test isn't accurate, stay off the gluten". My kids doctor told me "get them off the gluten regardless of the test results".

Sometimes I think some doctors are so educated that they lack common sense.

If you are improving...than I suggest you stay off the gluten.

PS both of my grandmothers were sick like your mother...one died from panceatic cancer...the other from colon cancer. Makes you go 'hmmmm....'

Best Wishes to you!

LynneM Apprentice
LynneM
Posted
  • Author

Thank you all for responding. I've been seeing a lot of references on the boards to Enterolab. I'm going to post a new question about that.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      126,202
    • Most Online (within 30 mins)
      7,748
    Maroney
    Newest Member
    Maroney
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.2k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • kopiq
      starting to heal, vitamin d deficiant but cannot tolerate vitamins. what to do? also multiple ongoing issues.

      By kopiq · Posted

      I also have food particles left on toiet paper when i wipe and my stool is light yellow not absorbing fats. I urinate about 15 times a day and have very sticky snot,dry throat.
    • kopiq
      starting to heal, vitamin d deficiant but cannot tolerate vitamins. what to do? also multiple ongoing issues.

      By kopiq · Posted

      Hi all, I was diagnosed by blood work about 2 months ago and have since went on a strict gluten free diet. I have an endoscopy in January and the GI dr said nothing about staying on gluten for it; hes aware i went no gluten. starting to heal symptoms include: (this is huge) sensation coming back to genitals and when having a bowl movement. everything has been numb for a long time down there including lower belly button area. good size (not abnormal) bowel movements once a day or every two days. small dot size wart just fell off my finger that was there for years. have not broke out with a cold sore this winter (every winter prior for years i would develop a cold sore on my lip) Ongoing issues I don't sweat. not from my hands, or armpits or feet. I do not get butterflys in stomach. my hands have been so dry for years ive been using a crack cream as they crack and bleed very severely in the fall and winter.  (since going gluten free ive not used crack cream but they are still very very dry and chapped/flaky, no sweat or moisture in palms of hands at all. I dont crave food. i have no cravings at all, not for pizza, ice cream , nothing. my cravings are dead. smell of foods kinda make me hungry, but my stomach blocks it. pins needles in feet get weak legs standing up from sitting and dizzy, things almost turn black. i cannot tolerate veggies or vitamins. Iam vitamin D deficient according to my Dr and Ive tried vitamin D pills. they give me a massive migraine for 8 hours and upset my stomach. the heat from the direct sun make me extremely tired to the point of wanting to pass out. again i don't sweat. broccoli gives me a migraine headache as well. mushrooms, bell peppers burn my stomach. fruits burn my stomach, fats (peanut butter, any oil or fat from meats make me sick to my stomach for a couple hours or longer. salt and pepper burns my stomach. all these issues cause pain at my belly button area and expand to the rest of my upper stomach and sides the more i ingest through out the day. I currently eat bland basmati rice, chicken, pork chops (fat trim), boiled russet potatoes no skin for three meals a day. my snacks are gluten free ground buckwheat flour pancakes. (just water, no oil , salt, dairy.) how am i to get vitamins in my system if i cannot tolerate them in my stomach? i mentioned epidermal vitamin patchs but dr said no. why cant i stand the heat from the sun ? why cant i sweat? thanks for any info.                
    • trents
      Celiac Maybe a Possibility?

      By trents · Posted

      Because you have significantly reduced your gluten intake over a considerable amount of time, it is likely that you will test negative on the antibody tests. However, if the $112 for the Quest test is not a burden, it wouldn't hurt to try. It tests for total IGA (to ascertain if you are IGA deficient) and tTG-IGA. If total IGA is deficient, it can result in false negatives in other IGA tests. The tTG-IGA is the single most popular test ordered by physicians. The Quest test is not a complete celiac panel by any means (refer to the linked article above) but it might be a good place to start. Personally, I think you know enough to conclude that you need to get serious about avoiding gluten, whether you have celiac disease or NCGS. Human nature being what it is, however, many people seem to need an official diagnosis of celiac disease in order to stay on the bandwagon. Otherwise, they seem to rationalize cheating on the gluten-free diet. And there is this misconception out there that NCGS is inconvenient and uncomfortable but not harmful so it's okay to cheat. The more we learn about gluten-related disorders the more they seem to not fit into our neat little black and white categories. By the way, celiac disease is not a food allergy. It is classified as an autoimmune disorder.
    • More2Learn
      Celiac Maybe a Possibility?

      By More2Learn · Posted

      These responses are all extremely helpful, ty.  Really good reminder about omega 6.  I also know I'm low in zinc; I took the zinc test where I drank it on a spoon and couldn't taste it.  To that end, I try to eat a lot of oysters.  I do think it would be a good idea to get the blood test.  Two questions: 1-  Is there any reason you wouldn't recommend that I just buy and take a test like this as a first step? 2- I've been somewhat gluten free since ~Jan 2023 (technically organic, gluten free, soy free, light on dairy).  I eat a lot of meat, vegetables, rice -- a common breakfast for me is three eggs and a sausage link, and I can't remember the last time I had a sandwich or bread.  However, because in my mind I didn't think I had an allergy, and I more was doing gluten free to avoid artificially iron-enriched foods, I do make exceptions.  I'll eat breaded calamari.  When my Dad visits, I split mozzarella sticks with him because he loves them so much.  I'll eat the "gluten sensitive" items at a restaurant and if they asked, "is cross contamination ok?",  I always said yes.  Based on that, since I never probably fully eliminated gluten, but it was significantly reduced... is that good enough to take the blood test?  Because the pain in my side gets SO bad (really sometimes I can't function, and I absolutely thought I was dying), I am hesitant to do the gluten challenge.  Would it make sense to take the test, and if it's negative, then consider doing the challenge and seeing if I can deal with eating the bread every day? Thanks again!
    • Yaya
      Muscle Twitching

      By Yaya · Posted

      For me, with osteoporosis, Celiac and more than 1 heart condition, the slower, safer route is preferable.  I'm on 5 meds per day.  Too much of anything can disturb absorption of this or that. Have a Happy Thanksgiving.  I'm gone for a few days.  
×
×
  • Create New...