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Help please!


Shem

Recommended Posts

Shem Rookie

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

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

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
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
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
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
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
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
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
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
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
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
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
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
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
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

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

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
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
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

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
(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
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
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
(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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    • Dora77
      Sorry for the long post. I’m 18, and I was diagnosed with celiac disease and type 1 diabetes (T1D). My transglutaminase IgA was >128 U/mL, EMA IgA positive twice, and I’m HLA-DQ2 and DQ8 positive. I’ve been completely asymptomatic since diagnosis, even when I cheated with gluten sometimes in the past and used to eat out(2-5 years ago) I don’t get the typical celiac reactions, which makes it really hard to know when (or if) I’ve been glutened. But for the past year, I’ve been the most strict with my diet, and that’s also when a bunch of new issues started. I eat completely glutenfree, never eat out, dont eat food that says „may contain gluten“.   Current Health Problems • Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds. Been ongoing for a year now. First noticed in the gym. • Abdominal bulge on the right side, not painful but seems to be getting slightly bigger. Doctor didn’t find a hernia on ultrasound, but it was done lying down (I’ve read those can miss hernias). Noticed it like 6 months ago, couldve been there longer. • extremely dry and mildly swollen hands (this started before I started excessive hand-washing), and bloated face. • Signs of inattentive ADHD (noticed over the past 3 years), now combined with severe OCD focused on contamination and cross-contact. • Growth/puberty seemed to started after going gluten-free. Before that I was not developing. Dont know if any of these are because of celiac as my dad doesnt have those and he is a lot less strict gluten-free then me. I also had pancreatic elastase tested four times: values were 46 (very low), 236, 158, and 306 (normal). Gastroenterologist said one normal value is enough and I don’t have EPI. Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon.   Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. My dad, who also has celiac but doesn’t care about CC, buys fruits, and he might’ve picked them up right after handling gluten bread. That makes me feel unsafe eating them. Even fruit at stores or markets feels risky because so many people with gluten on their hands touch them.   My Home Situation (Shared Kitchen) We’re a family of 5. Only my dad and I have celiac. He eats glutenfree but doesn’t care about CC and sometimes (but rarely) cheats. My mom and siblings eat gluten bread at every meal. My mom is honest (so if i ask her to be cautious, she most likely would try to), but doesn’t seem to understand how serious celiac is. She: • Stopped using gluten flour • only cooks gluten-free meals (but they still heat up gluten bread and also cook gluten noodles) • Keeps separate butter/jam/jars for me • Bought me a stainless steel pan Bu we didn’t replace old wooden utensils, cutting boards, or other pans. The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
    • lmemsm
      I've been making a lot of black bean brownies lately because it's one of the few gluten free dessert recipes that actually tastes palatable.  I've also seen chocolate cake recipes with black beans.  Someone mentioned a cookie recipe using lentils in place of flour.  Just wondering if anyone's run across any tried and true recipes using beans, lentils or peas for desserts?  I've seen a lot of recipes for garbanzo flour but I'm allergic to garbanzo beans/chickpeas.  Was wondering if adzuki or pinto beans might be useful in replacing some or all of the flour in baking.  Since gluten free flours can be crumbly was hoping the beans might help produce a better, less crumbly consistency.  Any recommendations for recipes?  Thanks.
    • lmemsm
      I've seen a lot of recipes for chia pudding, so I decided to make some with chia, water, cocoa and honey.  Didn't like the taste, so I added ground sunflower and ground pumpkin seed to it.  It tasted okay, but came out more like frosting that pudding.  I used to make pudding with tapioca starch, milk powder, water and sugar.  It came out very good but I haven't figured out what to use to replace the milk powder to make it dairy free.  Most starches will work in place of tapioca starch but quantity varies depending on the type of starch.  If I didn't add enough starch to get a pudding consistency, I'd add gelatin as well to fix it.  Avocado and cocoa makes a good dessert with a pudding like consistency.  Unfortunately, I have a bad reaction to avocados.
    • lmemsm
      Seems like when I find a gluten free product I like, the producer stops manufacturing it and then I have trouble finding a new gluten free source for it.  What's worse, I've been contacting companies to ask if their products are gluten free and they don't even bother to respond.  So, it's making it very hard to find safe replacements.  I was buying teff flour at nuts.com and they no longer carry it.  I noticed Naturevibe has teff and soy flour.  However, I can't get a response as to whether their flours are safe for someone with celiac.  Can't get a response from Aldi if their peas are safe for someone with celiac either.  I know Bob's Red Mill has teff flour but was hoping to get a large quantity.  I've been using up the 20 ounce Bob's Red Mill teff flour too quickly.  Does anyone know of a good source for teff or soy flour?  Any recommendations where to get gluten free beans, peas or lentils?  I found some packages of gluten free beans at Sprouts but not much variety.  I've also been looking for lentil elbow macaroni and it seems like no one is making that now that Tolerant was bought out.  Any suggestions for safe sources for these types of ingredients.  Thanks.
    • chrish42
      All I can say is this site is great!
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