Getting tested

[Toni Morrissey]

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.

[trents]

  On 5/7/2023 at 7:55 PM, 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.

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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]

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]

  On 5/7/2023 at 10:02 PM, 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.

 

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  On 5/7/2023 at 10:02 PM, 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.

 

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What were your symptoms?

[Wheatwacked]

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]

  On 5/8/2023 at 2:14 AM, 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.

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Hi!!

 

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

[Wheatwacked]

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.

[Sof]

  On 5/8/2023 at 12:21 PM, 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.

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

[Wheatwacked]

Welcome

 

[LindaW]

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]

  On 5/9/2023 at 3:54 PM, 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, 

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

[NotEllen]

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]

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

[cristiana]

  On 5/9/2023 at 4:25 PM, NotEllen said:

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

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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 May 9, 2023 by cristiana