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My Story, Looking For Opinions From You Experts!

LynneM

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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!

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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.

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

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    • lizzie42
      Son's legs shaking

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      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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