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Getting tested


Toni Morrissey
Go to solution Solved by trents,

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Toni Morrissey Newbie

My doctor is treating me for indigestion. We are early in the process after symptoms developed two months ago including bloating, stomach ache, headaches, both constipation and diarrhea, burping, fatigue etc. My daughter has celiac so I was tested 15-20 years ago. It was negative. Is it possible for me to develop later in life? How do I convince my doctor to test me? She doesn’t know yet about my daughter because I ruled it out because negative tests. I’m just miserable and so tired of being sick every day. Thanks for your help and advice.


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  • Solution
trents Grand Master
27 minutes ago, Toni Morrissey said:

My doctor is treating me for indigestion. We are early in the process after symptoms developed two months ago including bloating, stomach ache, headaches, both constipation and diarrhea, burping, fatigue etc. My daughter has celiac so I was tested 15-20 years ago. It was negative. Is it possible for me to develop later in life? How do I convince my doctor to test me? She doesn’t know yet about my daughter because I ruled it out because negative tests. I’m just miserable and so tired of being sick every day. Thanks for your help and advice.

It is absolutely possible to develop celiac disease later in life. celiac disease requires the genes but it also requires a triggering stress event, such as a viral infection, to turn the genes on.

Wheatwacked Veteran

My son was diagnosed in 1976. I was in denial until 2014.  I had it all my life, but the symptoms I had were not gastro related, so was never considered.

 

Toni Morrissey Newbie
3 minutes ago, Wheatwacked said:

My son was diagnosed in 1976. I was in denial until 2014.  I had it all my life, but the symptoms I had were not gastro related, so was never considered.

 

 

3 minutes ago, Wheatwacked said:

My son was diagnosed in 1976. I was in denial until 2014.  I had it all my life, but the symptoms I had were not gastro related, so was never considered.

 

What were your symptoms?

Wheatwacked Veteran

lifetime congested sinuses, prostate hypertrophy at 21, skinniest kid in school, sleep apnea, fibromyalgia, arthritis, foot neurapathy, never ending Seasonal affective disorder, had 35 pounds of bellyfat.  I got dumber from 3rd grade on. Brain fog. Back then I had a list of 19 that improved just as a result of GFD. Later I tracked my food intakes and discovered malnutrion because of my anorexia. I would, and actually still do, put off eating because I never knew if I would be better or worse after the meal. No one believes this but I became an alcoholic in 1984 when I got a thing for buttered hard rolls.  That went away the week I started GFD.

Sof Apprentice
7 hours ago, Wheatwacked said:

lifetime congested sinuses, prostate hypertrophy at 21, skinniest kid in school, sleep apnea, fibromyalgia, arthritis, foot neurapathy, never ending Seasonal affective disorder, had 35 pounds of bellyfat.  I got dumber from 3rd grade on. Brain fog. Back then I had a list of 19 that improved just as a result of GFD. Later I tracked my food intakes and discovered malnutrion because of my anorexia. I would, and actually still do, put off eating because I never knew if I would be better or worse after the meal. No one believes this but I became an alcoholic in 1984 when I got a thing for buttered hard rolls.  That went away the week I started GFD.

Hi!!

 

Did the food neuropathy go away after quitting gluten? Mine is improving but still there. 
 

Wheatwacked Veteran

Did you mean 'foot' ?.  That has been a long journey. Started with plantar faciitis, which I dealt with by hot showers down my back with shallow knee bends and gentle stretching.  Part of the problem with PL is tightness of the Achilles Tendon.

Even after gluten free then started the numbness, leathery skin, burning cold feet, etc. Kind of weird but the cramps would start only after sleeping on my side for 2 hours.  A sheet of Nori (42 mcg iodine) helped with the dry foot skin. My feet sweated more as they got colder until middle age.  Apparently we stop sweating to preserve iodine. Toes turned up and ankle turned down. I could walk it off, but it returned.  Magnesium oxide did not help.  2 ounces of cherry flavor liquid magnesium citrate (580 mg elemental Mg) in 20 ounces of water has been reversing it almost in the reverse order the problems started. Unlike other Mg pills it absorbs very quickly.  A 10 ounce bottle runs between $2 to $4.  The whole bottle is the dosage for contipation and clearing the colon for colonoscopy and such.  Low potassium and calcium intake could also be involved.


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Sof Apprentice
12 minutes ago, Wheatwacked said:

Did you mean 'foot' ?.  That has been a long journey. Started with plantar faciitis, which I dealt with by hot showers down my back with shallow knee bends and gentle stretching.  Part of the problem with PL is tightness of the Achilles Tendon.

Even after gluten free then started the numbness, leathery skin, burning cold feet, etc. Kind of weird but the cramps would start only after sleeping on my side for 2 hours.  A sheet of Nori (42 mcg iodine) helped with the dry foot skin. My feet sweated more as they got colder until middle age.  Apparently we stop sweating to preserve iodine. Toes turned up and ankle turned down. I could walk it off, but it returned.  Magnesium oxide did not help.  2 ounces of cherry flavor liquid magnesium citrate (580 mg elemental Mg) in 20 ounces of water has been reversing it almost in the reverse order the problems started. Unlike other Mg pills it absorbs very quickly.  A 10 ounce bottle runs between $2 to $4.  The whole bottle is the dosage for contipation and clearing the colon for colonoscopy and such.  Low potassium and calcium intake could also be involved.

Yes, I meant foot, thank you for your answer!

Wheatwacked Veteran

Welcome

 

LindaW Newbie

I developed Celiac Disease in my 50s!  You can most certainly get this later in life, just like allergies.  I have GERD so I am on daily med for that.  But when the doctor told me I would have to reintroduce gluten into my diet prior to testing I said no way!  I'm not satisfied with the accuracy of the blood testing.  So what I do is assume I have it, and go gluten free, 

Toni Morrissey Newbie
26 minutes ago, LindaW said:

I developed Celiac Disease in my 50s!  You can most certainly get this later in life, just like allergies.  I have GERD so I am on daily med for that.  But when the doctor told me I would have to reintroduce gluten into my diet prior to testing I said no way!  I'm not satisfied with the accuracy of the blood testing.  So what I do is assume I have it, and go gluten free, 

 

Thanks, Linda. I can’t wait for the diagnosis journey to be over.

NotEllen Newbie

I just got diagnosed at 68 years old, though I've probably had it for a couple of years. My mother had Celiac Disease and Dermatitis Herpetiformis, so I knew there was a chance I would get it. I was tested 25 years ago and was negative and thought that meant I was in the clear for life. I was surprised to learn that it can develop at any age. 

cristiana Veteran

My consultant diagnosed someone in their 90s a few years ago! 

cristiana Veteran
(edited)
25 minutes ago, NotEllen said:

I was surprised to learn that it can develop at any age

My nephew has type 1 diabetes and is tested for Coeliac routinely, I think every three years.   I was surprised when I heard this was routine testing was required as like you I thought once tested negative, always negative, but seemingly not.  Apparently up to 1 in 10 type 1 diabetics are coeliacs.

https://www.diabetes.org.uk/guide-to-diabetes/enjoy-food/eating-with-diabetes/managing-other-medical-conditions/coeliac-disease-diabetes#:~:text=Coeliac disease is more common,isn't an autoimmune condition. 

Edited by cristiana

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    • Wheatwacked
      My mom said when he was born "you got what you gave".  Until 5 years of he was gluten free, was well liked by his friends, although did get them into mischief at times, a leader of his group of friends, physically active and paid attention, as much as any preschooler.      At 5 years old we moved to my hometown and had to rely on our friends, my pediatrition (still the best doctor I ever had), my wife was a nurse so her aquaintences and doctor friends.  They all still believed back in 1980's that Celiac was a growing phase, and he wanted to be like everyone else.  So everyone's opinion was that if he tolerates gluten with no symptoms he had outgrown it.  He passed the summer at the beach (lots of vitamin D) was a prodegy swimmer and the whole team liked him and he fit in well.     Fall came, he started kindergarden school, less sun ( low vitamin D, Seasonal Affective Disorder is real), new people and a morning schedule that did not end up in a fun, active day at the beach.  Getting him going got more difficult.  By the first teacher-parent meeting in December, they brought up the subject.  He was disruptive in class.  By then we had forgotten what his doctor said 5 years earlier.  So he was diagnosed as ADHD.      Competitive swimming was his saving grace.  All though High School he continued to swim with his competetive team most days after or before school and with the beach club team in addition in the summer.  Some records he set lasted years.  After high school he became a professional ocean guard. Now getting close to retirement.  But always had difficulty concentrating on schoolwork.      He, and his wife, incidentally, is now having the health problems that I just have just gotten rid of.  I had forgotten what the doctor said to us 60 years earlier, bout Celiac Disease being hereditory.  He is starting to listen, but still in denial.  Loves his pizza.  At 63 I had arthritis, fibromyalgia, sleep apnea, enlarged prostate, alcoholism and I got dumber as the years passed.  They all are gone with gluten free and vitamin replenishment. My wife had allergies, endometriosis, fertility problems and miscarriages.  She passed 18 years ago. Sorry for the long story.  Reminds me of a Joni Mitchell song.  "L've looked at life from both sides now. From win and lose, but still somehow, it's life's illusions I recall. I really don't know life, at all"  
    • Beverage
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    • trents
      That's what came immediately to my mind as well, Bell's palsy. And don't assume every medical problem is connected to her celiac disease as there is still something known as coincidence. Get this checked out by medical professionals and push for some serious testing. Don't let them brush you off. Be appropriately assertive.
    • Mnofsinger
      Hi @CeliacMom502, As always, consult a medical professional on any advice you receive.  I experience have experienced this exact symptoms you're referring to and will receive them, typically after being accidentally glutened. I've recently been researching this (that's how I came across this posting), because I've been trying to nail down how long I've actually had the celiac genes "activated" or if I was just born with it. Now I wasn't diagnosed until 2023 with Celiac Disease, but not all these other health issues I've had previously point to it all connecting. In 2013 I ended up with Bell's Palsy that I had facial paralysis on one side of my face, where I couldn't even get a twitch for six months, but it took almost a year for "full recovery". I have now came to the conclusion that, because of the B12 vitamin deficiency caused by celiac disease (when not following a strict gluten free diet), caused me to have prolonged recovery from this, because the nerves were healing at a much lower rate> I'm not sure if your daughter has ever had Bell's Palsy, but ever since I have, some of my symptoms when I accidentally get glutened (including right now as I type this message 😄) include a migraine that goes across my eyes, and a shooting pain as you have described that will go across my left cheek and upper jaw, in addition to pain behind my left ear, and painful to the touch. Now, I did immediately go on a gluten free diet, and almost all these symptoms vanished after 3-4 months, but that time frame depends upon the "damage" already done previously.  Hope my situation helps even now this is now almost three years later from your message!  
    • Scott Adams
      It's nice to see celiac-safe options out there for guest homes.
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