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Help please!

Shem
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Shem Rookie
Shem
Posted

Hi there,

I was diagnosed with IBS in my 20's, diagnosed with cardiomyopathy in my 30's after a virus (myocarditis) which almost killed me.

Have eaten low carb mostly over theast 20yrs as I was aware that high carb food caused me pain and bloating.

In my 50's and had a cardiac arrest recently and they said it was an electrolyte imbalance but not related to my heart condition.

I have stopped gluten in the past week after researching countless documents and wonder if this is the root cause of my problems. Does anyone have a similar experience, and if so what do I do now? Tia 😊 

 

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cristiana Veteran
cristiana
Posted

Hiya Shem and welcome to the forum!
 

I would definitely want to look into this further if were in your shoes.  A few years ago I found an astounding statistic that around a quarter (it may have even been a third) of IBS sufferers in my country were thought to be undiagnosed coeliacs.  (Sorry - this is a bit vague, but I can't lay my hands on the paper just now).

You can of course suffer from both conditions - I do.  But if you do have coeliac disease it can have a very detrimental affect on your general health if you continue to eat gluten so I think you would be wise to approach your GP.  However, and this is important, you will need to be eating gluten - about 2 slices of bread or the equivalent - for about six weeks before your blood test for the antibodies to show.  If there is a negative result it is possible that you may have Non Coeliac Gluten Sensitivity, or that you are one of a small proportion of coeliacs whose blood test does not show you have the disease, and you may need an endoscopy to rule things out.

I am not sure where you are posting from but if it is the UK do look at Coeliac UK's website for helpful information for diagnosis through the NHS.

Do come back to us if we can help further.

Cristiana

Wheatwacked Veteran
Wheatwacked
Posted

This might peak your interest.   What Are the Symptoms of Celiac Disease?

Signs and Symptoms of Celiac Disease

  1. Abdominal cramps, gas and bloating
  2. Acne
  3. Anemia
  4. Ataxia (gluten ataxia)
  5. Borborygmi—stomach rumbling
  6. Coetaneous bleeding
  7. Delayed puberty
  8. Dental enamel defects
  9. Diarrhea
  10. Dry skin
  11. Easy bruising
  12. Epistaxis—nose bleeds
  13. Eczema
  14. Failure to thrive or short stature
  15. Fatigue or general weakness
  16. Flatulence
  17. Fluid retention
  18. Folic acid deficiency
  19. Foul-smelling yellow or grayish stools that are often fatty or oily
  20. Gastrointestinal symptoms
  21. Gastrointestinal hemorrhage
  22. General malaise, feeling unwell
  23. Hematuria—red urine
  24. Hypocalcaemia/hypomagnesaemia
  25. Infertility, or recurrent miscarriage
  26. Iron deficiency anemia
  27. Joint Pain
  28. Lymphocytic gastritis
  29. Malabsorption
  30. Malnutrition
  31. Muscle weakness
  32. Muscle wasting
  33. Nausea
  34. Obesity/Overweight
  35. Osteoporosis
  36. Pallor—pale, unhealthy appearance
  37. Panic Attacks
  38. Peripheral neuropathy
  39. Psychiatric disorders such as anxiety and depression
  40. Skin Problems—acne, eczema, DH, dry skin 
  41. Stunted growth in children
  42. Underweight
  43. Vertigo
  44. Vitamin A deficiency
  45. Vitamin B6 deficiency
  46. Vitamin B12 deficiency
  47. Vitamin D deficiency
  48. Vitamin K deficiency
  49. Vomiting
  50. Voracious appetite
  51. Weight loss
  52. Zinc deficiency

Conditions Associated with Celiac Disease

People with one or more of these associated conditions are at higher risk for celiac disease:

  1. Addison's Disease 
  2. Anemia 
  3. Anorexia Nervosa, Bulimia 
  4. Arthritis 
  5. Asthma 
  6. Ataxia, Nerve Disease, Neuropathy, Brain Damage 
  7. Attention Deficit Disorder 
  8. Autism 
  9. Bacterial Overgrowth 
  10. Cancer, Lymphoma 
  11. Candida Albicans 
  12. Canker Sores—Aphthous Stomatitis) 
  13. Casein / Cows Milk Intolerance 
  14. Chronic Fatigue Syndrome 
  15. Cognitive Impairment 
  16. Crohn's Disease 
  17. Depression 
  18. Dermatitis Herpetiformis
  19. Diabetes 
  20. Down Syndrome 
  21. Dyspepsia, Acid Reflux
  22. Eczema
  23. Epilepsy 
  24. Eye Problems, Cataract 
  25. Fertility, Pregnancy, Miscarriage 
  26. Fibromyalgia 
  27. Flatulence—Gas 
  28. Gall Bladder Disease 
  29. Gastrointestinal Bleeding 
  30. Geographic Tongue—Glossitis 
  31. Growth Hormone Deficiency 
  32. Hashimoto’s Thyroiditis
  33. Heart Failure 
  34. Infertility, Impotency 
  35. Inflammatory Bowel Disease 
  36. Intestinal Permeability 
  37. Irritable Bowel Syndrome 
  38. Kidney Disease 
  39. Liver and biliary tract disorders (transaminitis, fatty liver, primary sclerosing cholangitis, etc.)
  40. Low bone density
  41. Lupus 
  42. Malnutrition, Body Mass Index 
  43. Migraine Headaches 
  44. Multiple Sclerosis 
  45. Myasthenia Gravis Celiac Disease
  46. Obesity, Overweight 
  47. Osteopenia, osteoporosis, osteomalacia 
  48. Psoriasis 
  49. Refractory Celiac Disease & Collagenous Sprue
  50. Sarcoidosis 
  51. Scleroderma 
  52. Schizophrenia / Mental Problems 
  53. Sepsis 
  54. Sjogrens Syndrome 
  55. Sleep Disorders 
  56. Thrombocytopenic Purpura 
  57. Thyroid & Pancreatic Disorders 
  58. Tuberculosis 
Shem Rookie
Shem
Posted
  • Author
7 minutes ago, Wheatwacked said:

This might peak your interest.   What Are the Symptoms of Celiac Disease?

Signs and Symptoms of Celiac Disease

  1. Abdominal cramps, gas and bloating
  2. Acne
  3. Anemia
  4. Ataxia (gluten ataxia)
  5. Borborygmi—stomach rumbling
  6. Coetaneous bleeding
  7. Delayed puberty
  8. Dental enamel defects
  9. Diarrhea
  10. Dry skin
  11. Easy bruising
  12. Epistaxis—nose bleeds
  13. Eczema
  14. Failure to thrive or short stature
  15. Fatigue or general weakness
  16. Flatulence
  17. Fluid retention
  18. Folic acid deficiency
  19. Foul-smelling yellow or grayish stools that are often fatty or oily
  20. Gastrointestinal symptoms
  21. Gastrointestinal hemorrhage
  22. General malaise, feeling unwell
  23. Hematuria—red urine
  24. Hypocalcaemia/hypomagnesaemia
  25. Infertility, or recurrent miscarriage
  26. Iron deficiency anemia
  27. Joint Pain
  28. Lymphocytic gastritis
  29. Malabsorption
  30. Malnutrition
  31. Muscle weakness
  32. Muscle wasting
  33. Nausea
  34. Obesity/Overweight
  35. Osteoporosis
  36. Pallor—pale, unhealthy appearance
  37. Panic Attacks
  38. Peripheral neuropathy
  39. Psychiatric disorders such as anxiety and depression
  40. Skin Problems—acne, eczema, DH, dry skin 
  41. Stunted growth in children
  42. Underweight
  43. Vertigo
  44. Vitamin A deficiency
  45. Vitamin B6 deficiency
  46. Vitamin B12 deficiency
  47. Vitamin D deficiency
  48. Vitamin K deficiency
  49. Vomiting
  50. Voracious appetite
  51. Weight loss
  52. Zinc deficiency

Conditions Associated with Celiac Disease

People with one or more of these associated conditions are at higher risk for celiac disease:

  1. Addison's Disease 
  2. Anemia 
  3. Anorexia Nervosa, Bulimia 
  4. Arthritis 
  5. Asthma 
  6. Ataxia, Nerve Disease, Neuropathy, Brain Damage 
  7. Attention Deficit Disorder 
  8. Autism 
  9. Bacterial Overgrowth 
  10. Cancer, Lymphoma 
  11. Candida Albicans 
  12. Canker Sores—Aphthous Stomatitis) 
  13. Casein / Cows Milk Intolerance 
  14. Chronic Fatigue Syndrome 
  15. Cognitive Impairment 
  16. Crohn's Disease 
  17. Depression 
  18. Dermatitis Herpetiformis
  19. Diabetes 
  20. Down Syndrome 
  21. Dyspepsia, Acid Reflux
  22. Eczema
  23. Epilepsy 
  24. Eye Problems, Cataract 
  25. Fertility, Pregnancy, Miscarriage 
  26. Fibromyalgia 
  27. Flatulence—Gas 
  28. Gall Bladder Disease 
  29. Gastrointestinal Bleeding 
  30. Geographic Tongue—Glossitis 
  31. Growth Hormone Deficiency 
  32. Hashimoto’s Thyroiditis
  33. Heart Failure 
  34. Infertility, Impotency 
  35. Inflammatory Bowel Disease 
  36. Intestinal Permeability 
  37. Irritable Bowel Syndrome 
  38. Kidney Disease 
  39. Liver and biliary tract disorders (transaminitis, fatty liver, primary sclerosing cholangitis, etc.)
  40. Low bone density
  41. Lupus 
  42. Malnutrition, Body Mass Index 
  43. Migraine Headaches 
  44. Multiple Sclerosis 
  45. Myasthenia Gravis Celiac Disease
  46. Obesity, Overweight 
  47. Osteopenia, osteoporosis, osteomalacia 
  48. Psoriasis 
  49. Refractory Celiac Disease & Collagenous Sprue
  50. Sarcoidosis 
  51. Scleroderma 
  52. Schizophrenia / Mental Problems 
  53. Sepsis 
  54. Sjogrens Syndrome 
  55. Sleep Disorders 
  56. Thrombocytopenic Purpura 
  57. Thyroid & Pancreatic Disorders 
  58. Tuberculosis 

Oh my goodness! Both terrifying and enlightening. Thanks 😊 

Russ H Community Regular
Russ H
Posted
4 hours ago, Shem said:

Hi there,

I was diagnosed with IBS in my 20's, diagnosed with cardiomyopathy in my 30's after a virus (myocarditis) which almost killed me.

Have eaten low carb mostly over theast 20yrs as I was aware that high carb food caused me pain and bloating.

In my 50's and had a cardiac arrest recently and they said it was an electrolyte imbalance but not related to my heart condition.

I have stopped gluten in the past week after researching countless documents and wonder if this is the root cause of my problems. Does anyone have a similar experience, and if so what do I do now? Tia 😊 

 

Hi Shem

Coeliac disease can have unusual symptoms. I have read a case report of a 15 year old girl diagnosed purely from severe chilblains, a naval officer with tendon ruptures that turned out to be due to scurvy caused by coeliac disease. Coeliac disease does increase the chance of developing cardiovascular disease, and it is known to cause cardiac arrhythmias - in fact I had an arrhythmia that resolved following diagnosis and gluten free diet. Do you know what type of electrolyte imbalance caused your heart trouble - sodium or calcium for example?

Your decades of gastrointestinal symptoms is sufficient grounds for testing for coeliac disease. I would ask your doctor for a full coeliac disease blood panel. Note that you must be eating gluten every day for the 6 weeks prior to the panel to get reliable antibody results.

Shem Rookie
Shem
Posted
  • Author
1 minute ago, Russ314 said:

Hi Shem

Coeliac disease can have unusual symptoms. I have read a case report of a 15 year old girl diagnosed purely from severe chilblains, a naval officer with tendon ruptures that turned out to be due to scurvy caused by coeliac disease. Coeliac disease does increase the chance of developing cardiovascular disease, and it is known to cause cardiac arrhythmias - in fact I had an arrhythmia that resolved following diagnosis and gluten free diet. Do you know what type of electrolyte imbalance caused your heart trouble - sodium or calcium for example?

Your decades of gastrointestinal symptoms is sufficient grounds for testing for coeliac disease. I would ask your doctor for a full coeliac disease blood panel. Note that you must be eating gluten every day for the 6 weeks prior to the panel to get reliable antibody results.

Thanks for this! I have not got detail on the imbalance as it was inconclusive and a consideration - so too was a hormone imbalance. I am definitely not keen on reintroducing gluten, however if that's my only option. I had considered contacting my cardiologist with a view to see if gluten free improved my heart function!

Russ H Community Regular
Russ H
Posted
1 minute ago, Shem said:

Thanks for this! I have not got detail on the imbalance as it was inconclusive and a consideration - so too was a hormone imbalance. I am definitely not keen on reintroducing gluten, however if that's my only option. I had considered contacting my cardiologist with a view to see if gluten free improved my heart function!

The best way to see whether you have coeliac disease is a blood test for antibodies. In the UK, this would normally be requested by your GP (are they called family doctor in the US?) or gastrointestinal specialist. It is a simple test and quite sensitive. If positive, you would likely be referred for an endoscopy for confirmation.

When you say that you had a cardiac arrest, did your heart actually stop or did you have a blockage (infarction)?

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Shem Rookie
Shem
Posted
  • Author
16 minutes ago, Russ314 said:

The best way to see whether you have coeliac disease is a blood test for antibodies. In the UK, this would normally be requested by your GP (are they called family doctor in the US?) or gastrointestinal specialist. It is a simple test and quite sensitive. If positive, you would likely be referred for an endoscopy for confirmation.

When you say that you had a cardiac arrest, did your heart actually stop or did you have a blockage (infarction)?

Hi, Yeah I am in the UK. No blockage, electrical - my heart stopped / quivered for 7 minutes my husband performed CPR and my son called an ambulance.

 

Russ H Community Regular
Russ H
Posted
4 hours ago, Shem said:

Hi, Yeah I am in the UK. No blockage, electrical - my heart stopped / quivered for 7 minutes my husband performed CPR and my son called an ambulance.

 

Serious stuff, glad you came through OK and credit to your husband and son.

If you are in the UK, getting tested is straightforward. Ask your GP to test you for coeliac disease. Your symptoms meet the NICE guidelines for testing - see below:

https://www.nice.org.uk/guidance/ng20/chapter/Recommendations#recognition-of-coeliac-disease

Both persistent symptoms and IBS are sufficient to be offered testing. If your doctor hesitates, show them this document and if that doesn't work, ask for a second opinion.

Although more tests are becoming available in the UK, what you will probably be offered is IgA anti-tTG2 and total IgA in the first place. If negative, you might be offered other blood tests. If positive, depending on your age and symptoms you might be offered a follow up endoscopy. People under the age of 55 with strong positive blood test results and no concerning symptoms are now diagnosed by blood test alone.

Of course, you may not have coeliac disease but it certainly sounds worth testing for, and if you do have it a strict gluten free diet normally puts it into complete remission.

 

 

Shem Rookie
Shem
Posted
  • Author
27 minutes ago, Russ314 said:

Serious stuff, glad you came through OK and credit to your husband and son.

If you are in the UK, getting tested is straightforward. Ask your GP to test you for coeliac disease. Your symptoms meet the NICE guidelines for testing - see below:

https://www.nice.org.uk/guidance/ng20/chapter/Recommendations#recognition-of-coeliac-disease

Both persistent symptoms and IBS are sufficient to be offered testing. If your doctor hesitates, show them this document and if that doesn't work, ask for a second opinion.

Although more tests are becoming available in the UK, what you will probably be offered is IgA anti-tTG2 and total IgA in the first place. If negative, you might be offered other blood tests. If positive, depending on your age and symptoms you might be offered a follow up endoscopy. People under the age of 55 with strong positive blood test results and no concerning symptoms are now diagnosed by blood test alone.

Of course, you may not have coeliac disease but it certainly sounds worth testing for, and if you do have it a strict gluten free diet normally puts it into complete remission.

 

 

Thanks for this! 

I am reluctant to approach the GP as you can imagine having had a 'serious heart condition' for close to 30yrs the GP is fearful to do anything without cardiology's permission. Well that is my experience anyway, additionally I have had a defibrillator fitted after the CA and I am reluctant to add gluten back into my diet which may cause an arrythmia that stopped my heart in the first place. My defib is set to shock me if that were to be the case. Hopefully the cardiologist takes me seriously enough to check if it improves my heart function in the first place. Ironically there has been no change to my heart function since 2011 - wouldn't it be great if the inflammation went away. ❤

Russ H Community Regular
Russ H
Posted
Just now, Shem said:

Thanks for this! 

I am reluctant to approach the GP as you can imagine having had a 'serious heart condition' for close to 30yrs the GP is fearful to do anything without cardiology's permission. Well that is my experience anyway, additionally I have had a defibrillator fitted after the CA and I am reluctant to add gluten back into my diet which may cause an arrythmia that stopped my heart in the first place. My defib is set to shock me if that were to be the case. Hopefully the cardiologist takes me seriously enough to check if it improves my heart function in the first place. Ironically there has been no change to my heart function since 2011 - wouldn't it be great if the inflammation went away. ❤

How long have you been gluten free? Have you noticed any change in your other symptoms while excluding gluten?

Shem Rookie
Shem
Posted
  • Author
Just now, Russ314 said:

How long have you been gluten free? Have you noticed any change in your other symptoms while excluding gluten?

Believe it or not only a few days. The dizziness that I have had on standing up for the last 8 months has disappeared, I have gone down a size in clothes just from bloating/water retention and my wedding rings which I have not been able to get on my fingers for 2yrs now fit perfectly. 

Russ H Community Regular
Russ H
Posted
Just now, Shem said:

Believe it or not only a few days. The dizziness that I have had on standing up for the last 8 months has disappeared, I have gone down a size in clothes just from bloating/water retention and my wedding rings which I have not been able to get on my fingers for 2yrs now fit perfectly. 

I think it could be worth your getting tested. There are medical advantages to having a formal diagnosis. It is a blood test rather than a medical intervention, and it would be beneficial to know whether you do indeed have coeliac disease. Your GP would refer you for testing if you ask for it. The half life of coeliac antibodies is 3-4 months, so if you get tested soon even on a gluten free diet it would probably show whether you have the disease. Best would be for you to resume eating gluten, get a referral for a blood test that could be in a few days and then go back to a strict gluten free diet.

Shem Rookie
Shem
Posted
  • Author
2 minutes ago, Russ314 said:

I think it could be worth your getting tested. There are medical advantages to having a formal diagnosis. It is a blood test rather than a medical intervention, and it would be beneficial to know whether you do indeed have coeliac disease. Your GP would refer you for testing if you ask for it. The half life of coeliac antibodies is 3-4 months, so if you get tested soon even on a gluten free diet it would probably show whether you have the disease. Best would be for you to resume eating gluten, get a referral for a blood test that could be in a few days and then go back to a strict gluten free diet.

Okay thanks for this, curiously I had bloods done recently for something else and my vit d was deficient and I had elevated thyroid peroxidase antibodies. Was told it was nothing to worry about 🤔 A bit of a jigsaw puzzle but will definitely get to the bottom of it. Thanks for your advice! 

Russ H Community Regular
Russ H
Posted
Just now, Shem said:

Okay thanks for this, curiously I had bloods done recently for something else and my vit d was deficient and I had elevated thyroid peroxidase antibodies. Was told it was nothing to worry about 🤔 A bit of a jigsaw puzzle but will definitely get to the bottom of it. Thanks for your advice! 

Yes, that is another couple of pieces in the jigsaw. Vitamin D deficient, autoimmune thyroid antibodies - they are associated with coeliac disease. Of course, it may not be coeliac disease. I would urge any of my family or friends with what you have described to get down to the quack and get tested. In the worse case, it would eliminate a possible cause.

Shem Rookie
Shem
Posted
  • Author
1 minute ago, Russ314 said:

Yes, that is another couple of pieces in the jigsaw. Vitamin D deficient, autoimmune thyroid antibodies - they are associated with coeliac disease. Of course, it may not be coeliac disease. I would urge any of my family or friends with what you have described to get down to the quack and get tested. In the worse case, it would eliminate a possible cause.

So just to check, I don't need to poison myself for 6wks with 2 slices of bread everyday. Would I get away with eating less as you think the antibodies may still be in my system if I get tested soon?

Russ H Community Regular
Russ H
Posted

I don't know for sure. Coeliac disease is a complicated immune disease that varies greatly between individuals. The gold standard is to ingest at least 2 slices of wheat bread daily for at least 6 weeks prior to blood testing. For endoscopy, 2 weeks is considered sufficient in some quarters. Antibodies are generated in the intestinal wall during the immune response and escape into the blood, so the blood serum response is delayed compared with the intestinal response. The antibody levels vary greatly between people: some people have more IgA class, some have more IgG class, some have more anti-gliadin, some have more anti-tTG. Once you stop eating gluten, serum antibodies decay with a half-life of 3-4 months. Obviously, I cannot recommend what course of action for you to take. However, I would recommend a member of my family or close friend in such a case to resume eating gluten and get tested ASAP, then go strictly gluten free. A telephone consultation should be enough to get a blood test booked with the magic words of chronic IBS and gastrointestinal symptoms.

Kate333 Rising Star
Kate333
Posted

So glad you recovered and are feeling better!

Since celiac disease is linked to a higher risk of heart conditions, including A-fib, I completely understand your reluctance to resume eating gluten.  You could just order a home lab blood test kit to assess your current level of gluten antibodies.  If it's abnormally high, then you have your answer without ingesting more gluten and risking further damage and could just continue gluten-free eating. 

Dizziness upon standing (orthostatic or postural hypotension) is linked to advanced age + standing up too fast.  Also linked to untreated anxiety/poor sleep, and/or high blood pressure.  Make sure to get evaluated and treated for those conditions as well.           

Shem Rookie
Shem
Posted
  • Author
2 hours ago, Kate333 said:

So glad you recovered and are feeling better!

Since celiac disease is linked to a higher risk of heart conditions, including A-fib, I completely understand your reluctance to resume eating gluten.  You could just order a home lab blood test kit to assess your current level of gluten antibodies.  If it's abnormally high, then you have your answer without ingesting more gluten and risking further damage and could just continue gluten-free eating. 

Dizziness upon standing (orthostatic or postural hypotension) is linked to advanced age + standing up too fast.  Also linked to untreated anxiety/poor sleep, and/or high blood pressure.  Make sure to get evaluated and treated for those conditions as well.           

Hi Kate,

Thanks! Yeah cardiologist had presumed it was hormonal having ruled out POTS. My blood pressure is naturally low anyway but having read some papers on this i understand that gluten could be responsible for this too. 

Wheatwacked Veteran
Wheatwacked
Posted
9 hours ago, Shem said:

Believe it or not only a few days. The dizziness that I have had on standing up for the last 8 months has disappeared, I have gone down a size in clothes just from bloating/water retention and my wedding rings which I have not been able to get on my fingers for 2yrs now fit perfectly.

This right here is enough reason. You made more progress in 3 days than your doctors have in 20 years. Fix your deficiencies, especially the vitamin D. Get your homocysteine checked, high homocysteine can be caused by deficiency in B6, B12, Choline or Folate or all of them and is often found in Celiac Disease. It is an independent indicator of vascular inflammation. 

Both my mom and dad were on pacemaker/defibrillators. He died of sepsis from leaky gut and she died of heart failure type 2 diabetes out of control. They had to turn his off so he could die and she died but the nurses station still had a heartbear so we had to go tell them.

 

Shem Rookie
Shem
Posted
  • Author

Oh my that is horrific! I am not going to be able to speak to my specialist for a few weeks so I am going to remain gluten free and if this improves my cardiac function then I can take it from there. My Vit D is being treated and I am on a good multi vitamin for now. Thanks for the advice 🙏 

 

cristiana Veteran
cristiana
Posted
(edited)

Hi Shem

Forgive me but my personal circumstances at the moment mean I haven't got a lot of time to read this thread properly, so this may have been or not been covered already...

I did note @Russ314's very interesting point about the half life of coeliac antibodies.   That's good news, because I feel that it would be worth getting the full coeliac panel of blood tests done as a matter of urgency if you are giving up gluten now, and, dare I say it, including gluten in your diet for a little longer until you have the test, because in the UK there can be real advantages of having a firm diagnosis. 

Where I live coeliacs are offered through the National Health Service and therefore free of charge a DEXA bone scan as a matter of course after diagnosis, to check for osteopenia/osteoporosis, and this is repeated as a matter of course every few years.   We are assigned a nutritionist that one normally sees a couple of times but can access readily if more issues arise.  Also, regular blood tests and follow-ups with a gastroenterologist every six months and then, as things settle, annually, to check healing and also to check for other conditions developing that coeliacs are prone to.   I am a bit of a "creaking gate" and I cannot tell you how much all this extra support and access to expert advice has helped and reassured me over the years!  It has also been my experience that I have been able to access a gastroenterologist very quickly without going through a GP when I had some troubling symptoms a few years ago.  I think this sort of after care should be offered as a matter of course to all diagnosed coeliacs, it is possibly what NICE recommend, but as I say, I'm in a bit of a hurry at the moment - you  may wish to look it up.

Anyway - that has been my experience, I think aftercare can be a bit patchy in the UK, but I thought it might be worth my raising this.

Whatever you decide to do I hope all goes well.

Cristiana

 

Edited by cristiana
LCAnacortes Enthusiast
LCAnacortes
Posted
On 6/16/2022 at 1:16 PM, Shem said:

Believe it or not only a few days. The dizziness that I have had on standing up for the last 8 months has disappeared, I have gone down a size in clothes just from bloating/water retention and my wedding rings which I have not been able to get on my fingers for 2yrs now fit perfectly. 

Hi there - I stopped gluten at the beginning of May and I dropped a lot of water initially too and was overjoyed because I had been dealing with it for years. But some water retention came back a week later and I was super disappointed. My mom had water retention all of her life and water pills didn't help - now we know why. Gluten issues come from her side of the family. Anyway - I wanted to warn you in case the water comes back.  I am now trying supplements to correct it.  Haven't hit the right combination yet. I suspect my B complex does not have enough B1. 

knitty kitty Grand Master
knitty kitty
Posted
On 6/16/2022 at 3:26 PM, Russ314 said:

The half life of coeliac antibodies is 3-4 months, so if you get tested soon even on a gluten free diet it would probably show whether....

Please provide a source or reference for this statement.

knitty kitty Grand Master
knitty kitty
Posted
(edited)
On 6/17/2022 at 3:50 AM, Shem said:

Oh my that is horrific! I am not going to be able to speak to my specialist for a few weeks so I am going to remain gluten free and if this improves my cardiac function then I can take it from there. My Vit D is being treated and I am on a good multi vitamin for now. Thanks for the advice 🙏 

 

Follow your cardiac doctor's advice.  Remain gluten free.  A genetic test for common genes in Celiac Disease may be a better option for you as you won't have to endure a gluten challenge for a genetic test.

Atrial fibrillation, POTS, and water retention are all symptoms of thiamine deficiency.  

Thiamine Vitamin B1 is one of the B vitamins that can quickly  become low or deficient in Celiac Disease.  Thiamine deficiency  symptoms can be seen in as little as nine days.  Thiamine deficiency/insufficiency can fluctuate depending on how much Thiamine is consumed in the diet daily.

Please read this paper and share it with your doctor.  Thiamine insufficiency/deficiency is frequently overlooked by doctors.

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

And another...

Thiamine Deficiency is Associated with Longer Length of Stay and Higher Hospitalization Cost in Patients with Atrial Fibrillation

https://www.ahajournals.org/doi/10.1161/circ.144.suppl_1.9983

Hope this helps!

Edited by knitty kitty
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    • Scott Adams
      Does anyone here also have Afib

      By Scott Adams · Posted

      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
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