Other Diseases you have been diagnosed with before your Celiac Diagnosis

[Posterboy]

To All those who have had  other disease diagnosis's before your Celiac Diagnsosis,

Someone more experienced on this board might set up a poll to see how many of the tags in the thread apply to those who have received either a celiac disease or NCGS diagnosis for those who read this board.

See this new research as posted on Celiac.com today

https://www.celiac.com/articles/24448/1/Gluten-Definitely-Triggers-Symptoms-in-Some-NCGS-Patients/Page1.html?utm_source=phplist1864&utm_medium=email&utm_content=HTML&utm_campaign=Celiac.com+Update%3A+Can+Some+Celiac+Disease+Be+Treated+with+More+than+Just+a+GFD%3F

A survey how many diseases other than Celiac disease were you diagnosed with before you received your Celiac Diagnosis? Or what other disease(s) do you also have as a result of either not being diagnosed with Celiac disease sooner or that are occurring with (Co-Morbid) with your Celiac diagnosis: A Survey/Discussion of how Co-Morbidity i.e., Pellagra might explain some of the GI problems you might be experiencing with/as a Celiac patient. I know of at least one other person on this board who has shown symptom improvement when using Niacin (best taken in the Niacinamide form) a harder to find flush free form that is often used in skin creams to treat dermatitis issues that might be confused for D.H. among Celiac sufferer’s.

I was wondering if others’ have used it (Niacin in the Niacinamide form) for symptom relief for their GI problems. I find among my friends who try it they experience much better control from contamination issues once the Vitamin induces/causes them to burp.

Has anyone else experienced similar results? Am I alone? Or would you be willing to try Niacinamide to see if it might cause burping and improve CC issues for you too the way it has me. If so please join the discussion and comment.

Posterboy,

 

[gigdeb]

I was only diagnosed with celiac disease two weeks ago, but here is a list of the things that have happened to me just in 2016:  In May 2016, I developed a macular hole in my left eye and had to have a vitrectomy to repair it.  In June 2016 I tore the meniscus in my left knee, getting into my car and had to have it repaired surgically.  In September 2016 I developed a macular hole in my right eye and had to have a vitrectomy to repair it.  Now I have developed cataracts in both eyes and have surgery scheduled the first part of 2017 - it seems like "the hits just keep on hitting".  I asked my eye surgeon yesterday about the possibility that all of these things could be related to my celiac disease diagnosis and he said that he was highly suspicious that they are all related since celiac disease is anauto-immune disease which affects our connective tissue.  I was also diagnosed with Graves Disease in 1998 which is surely also related somehow.

[GFinDC]

20 minutes ago, gigdeb said:

I was only diagnosed with celiac disease two weeks ago, but here is a list of the things that have happened to me just in 2016:  In May 2016, I developed a macular hole in my left eye and had to have a vitrectomy to repair it.  In June 2016 I tore the meniscus in my left knee, getting into my car and had to have it repaired surgically.  In September 2016 I developed a macular hole in my right eye and had to have a vitrectomy to repair it.  Now I have developed cataracts in both eyes and have surgery scheduled the first part of 2017 - it seems like "the hits just keep on hitting".  I asked my eye surgeon yesterday about the possibility that all of these things could be related to my celiac disease diagnosis and he said that he was highly suspicious that they are all related since celiac disease is an auto-immune disease which affects our connective tissue.  I was also diagnosed with Graves Disease in 1998 which is surely also related somehow.

Hi gigdeb,

I've had cataract surgery in both eyes.  I have one suggestion that might help you.  When your doctor prepares your new lenses, ask them to make one for distance vision and make one for close up vision.  That way you can see both close up and far away without glasses.  If I had it to do over I would do that myself.  As it is I can now see distance fine, but have to wear glasses up close.  But at least I don't have to wear glasses for distance which is nice, as I wore glasses since a young age.  My sister wears contacts and that's how her contacts are setup.  She said she doesn't even notice the close up vs far distance issue because her mind automatically adjusts to seeing out of the appropriate eye/lens.

Celiac disease can cause malabsorption of nutrients, which can cause issues for any part of the body.  Your doctor should test you for nutrient deficiencies.  Some of the common ones are B-12 and Vitamin D.

There is a condition called Hashimoto's Thyroiditis that attacks the thyroid.  It is associated with celiac disease.

Here is a list of conditions with a higher than usual rate among celiacs:

http://www.beyondceliac.org/celiac-disease/related-conditions/

http://www.beyondceliac.org/celiac-disease/related-conditions/thyroid-disease/

And welcome to the forum!

[Posterboy]

gigdeb,

It is amazing how many things line up when you first discover you have developed Celiac disease after all these years.

Some of the same things associated with Celiac disease are also associated with having low stomach/poor gastric function.

https://www.drmyattswellnessclub.com/GastricAcidFunction.htm

And Graves disease is an associated disease of having poor stomach function.

Strong stomach acid helps us absorb our Vitamin and Minerals that we use to regulate our organs.

Look into Iodine if you having goiter problems.  Selenium is also helpful for Thyroid problems.

Functional Medicine doctor's get that nutrients (vitamins and minerals) are necessary to help our body function correctly.

1/3 of will have a thyroid problem in our life's and when I was first diagnosed as a celiac I was starting to have thyroid problems.

It has since got better.  Both Iodine and Selenium helped restore my body's function.

Having a thyroid associated disease you might enjoy reading this article about doctor's whom struggled to diagnose someone with a thyroid condition in the Nytimes.

http://www.nytimes.com/2016/09/01/well/live/think-like-a-doctor-the-sick-traveler.html?action=click&contentCollection=Well&module=RelatedCoverage&region=EndOfArticle&pgtype=article&_r=0

Sometimes it as simple as taking our temperature and why historically a doctor's visit would always check your body temperature when people come in for an office visit.

But I find my doctor doesn't always do that anymore.

Dr. Chris Kresser has a free ebook on thyroid problems.

I don't know if it would help you are not but you can't beat free as they say.

Here is the link to his thyroid page.

https://chriskresser.com/thyroid/

He also has some great information on low stomach acid and GERD and about  "what everybody ought to know about heartburn but doesn't" series of articles.

I just wish more people gave vitamin/minerals more of a chance these days.

See this link to part I of the series https://chriskresser.com/what-everybody-ought-to-know-but-doesnt-about-heartburn-gerd/

Where he says talking about heartburn/GERD

"Curing a disease means eliminating its cause. When a disease is cured, the symptoms don’t return once the treatment is removed. This of course is not the case with drugs for heartburn and GERD. As soon as the patient stops taking them, the symptoms return. And often they’re worse than they were before the patient started the drug." noting like most Functional Medicine doctor's "a symptom is not a cause" and why I believe taking Selenium and Iodine helped my thyroid problem.

The symptom (thyroid problems) was not the cause of my problems but my low minerals related to my my celiac disease.

And why I think both Iodine and Selenium helped my thyroid.

Good luck on your journey and thanks for sharing.

I hope this is helpful.

posterboy,

 

 

[GFinDC]

I agree Posterboy that nutrients are very important for our health.  IMHO every newly diagnosed celiac should be tested for vitamin and mineral deficiencies.  That makes sense because celiac disease damage can cause malabsorption.

There is a ton of information on thyroid issues on the internet that is free.   A little Google or Dogpile searching will turn it up.  I have a little problem with the Dr. Myatt link though.  This section makes no sense to me.

****************************************************

https://www.drmyattswellnessclub.com/GastricAcidFunction.htm

The Gastric Acid Function Self-Test

You can perform a gastric acid self-test at home using some betain HCL capsules taken with meals. If digestion improves - bingo! You’re hydrochloric acid deficient. If you did not have any digestive complaints but you don't feel anything with added HCL, it is highly likely that you have a stomach acid deficiency and would benefit from taking betain HCL with meals.

****************************************************

This paragraph states that if you take betaine HCL and your symptoms improve then you have a low hydrocloric acid problem.  It then states in the very next sentence that if you feel nothing then you also have a low stomach acid problem.  That seems like a poor test if it means the same thing no matter what the outcome is.  I call BS on that site!

I don't doubt people can have low stomach acid issues.  I think they are common especially in older people.  And probably many people would benefit from taking betaine HCL.  But I don't think they need a test kit to find that out as promoted by Dr. Myatt.  He/she also doesn't even know how to spell betaine.  Pretty poor for a page supposedly written by an pro on the subject.

Selenium and iodine can be helpful for thyroid issues I believe.  But people need to be aware they can overdose on them also.  Too much of a good thing is just that, too much.

Links from respected medical sources are a lot more believable IMHO.  Sites that aren't selling anything are better.  That's my opinion and I'm sticking to it!

Edited December 2, 2016 by GFinDC

[kareng]

2 hours ago, Posterboy said:

gigdeb,

It is amazing how many things line up when you first discover you have developed Celiac disease after all these years.

Some of the same things associated with Celiac disease are also associated with having low stomach/poor gastric function.

https://www.drmyattswellnessclub.com/GastricAcidFunction.htm

And Graves disease is an associated disease of having poor stomach function.

Strong stomach acid helps us absorb our Vitamin and Minerals that we use to regulate our organs.

Look into Iodine if you having goiter problems.  Selenium is also helpful for Thyroid problems.

Functional Medicine doctor's get that nutrients (vitamins and minerals) are necessary to help our body function correctly.

1/3 of will have a thyroid problem in our life's and when I was first diagnosed as a celiac I was starting to have thyroid problems.

It has since got better.  Both Iodine and Selenium helped restore my body's function.

Having a thyroid associated disease you might enjoy reading this article about doctor's whom struggled to diagnose someone with a thyroid condition in the Nytimes.

http://www.nytimes.com/2016/09/01/well/live/think-like-a-doctor-the-sick-traveler.html?action=click&contentCollection=Well&module=RelatedCoverage&region=EndOfArticle&pgtype=article&_r=0

Sometimes it as simple as taking our temperature and why historically a doctor's visit would always check your body temperature when people come in for an office visit.

But I find my doctor doesn't always do that anymore.

Dr. Chris Kresser has a free ebook on thyroid problems.

I don't know if it would help you are not but you can't beat free as they say.

Here is the link to his thyroid page.

https://chriskresser.com/thyroid/

He also has some great information on low stomach acid and GERD and about  "what everybody ought to know about heartburn but doesn't" series of articles.

I just wish more people gave vitamin/minerals more of a chance these days.

See this link to part I of the series https://chriskresser.com/what-everybody-ought-to-know-but-doesnt-about-heartburn-gerd/

Where he says talking about heartburn/GERD

"Curing a disease means eliminating its cause. When a disease is cured, the symptoms don’t return once the treatment is removed. This of course is not the case with drugs for heartburn and GERD. As soon as the patient stops taking them, the symptoms return. And often they’re worse than they were before the patient started the drug." noting like most Functional Medicine doctor's "a symptom is not a cause" and why I believe taking Selenium and Iodine helped my thyroid problem.

The symptom (thyroid problems) was not the cause of my problems but my low minerals related to my my celiac disease.

And why I think both Iodine and Selenium helped my thyroid.

Good luck on your journey and thanks for sharing.

I hope this is helpful.

posterboy,

 

 

I don't think either of those are actual " doctors".  Unfortunately, in the US, you can call yourself doctor and there is little regulation.  They might have good info..... but I would want to get some more scientific/ medical info to support it.   

Edited December 2, 2016 by kareng

[Posterboy]

On 12/1/2016 at 5:16 PM, GFinDC said:

I agree Posterboy that nutrients are very important for our health.  IMHO every newly diagnosed celiac should be tested for vitamin and mineral deficiencies.  That makes sense because celiac disease damage can cause malabsorption.

There is a ton of information on thyroid issues on the internet that is free.   A little Google or Dogpile searching will turn it up.  I have a little problem with the Dr. Myatt link though.  This section makes no sense to me.

****************************************************

https://www.drmyattswellnessclub.com/GastricAcidFunction.htm

The Gastric Acid Function Self-Test

You can perform a gastric acid self-test at home using some betain HCL capsules taken with meals. If digestion improves - bingo! You’re hydrochloric acid deficient. If you did not have any digestive complaints but you don't feel anything with added HCL, it is highly likely that you have a stomach acid deficiency and would benefit from taking betain HCL with meals.

****************************************************

This paragraph states that if you take betaine HCL and your symptoms improve then you have a low hydrocloric acid problem.  It then states in the very next sentence that if you feel nothing then you also have a low stomach acid problem.  That seems like a poor test if it means the same thing no matter what the outcome is.  I call BS on that site!

I don't doubt people can have low stomach acid issues.  I think they are common especially in older people.  And probably many people would benefit from taking betaine HCL.  But I don't think they need a test kit to find that out as promoted by Dr. Myatt.  He/she also doesn't even know how to spell betaine.  Pretty poor for a page supposedly written by an pro on the subject.

Selenium and iodine can be helpful for thyroid issues I believe.  But people need to be aware they can overdose on them also.  Too much of a good thing is just that, too much.

Links from respected medical sources are a lot more believable IMHO.  Sites that aren't selling anything are better.  That'smy opinion and I'm sticking to it!

GFinDC,

I agree sites that don't sell something are better are at least they should be but as kareng points out . . . they can be useful resources for plain english explanation to laymen.

I do find most doctor's sites that recommend vitamins/minerals also sell them.  You can take the wrong kind/form (non-bio-available) like Magnesium Oxide and get no benefit so I only use them as resource to find the best form available to my body.

Magnesium Citrate ended my chronic fatigue but I know a lot of people who take the cheapest easiest available Magnesium oxide who show no benefit form which is sad because now they often now never consider Magnesium in the bio-available form citrate and/or glycinate that really helps our body to make energy.

I am like you I  never buy their vitamins but I do use their good information to confirm other research I did on the topic.  That often can tell me where to look in the medical journals to see if what they say is true.

Concerning what Dr. Myatt said (you can't cover everything in one page sometimes) and why my posts tend to be long (and I am a rambler) but what was left out for brevity (maybe not clarity) is called "gastric tolerance"

the research of what is considered a safe dose when taking a supplement or medicine.

See this link where the "gastric tolerance" of acetylsalicylic acid (ASA) also commonly known as Aspirin is being determined.

https://www.ncbi.nlm.nih.gov/pubmed/1473880

Dr. Prousky talks about the theory of "gastric tolerance" and what it means when he researched "Is Vitamin B3 Dependency a Causal Factor in the Development of Hypochlorhydria and Achlorhydria?"

at this link http://orthomolecular.org/library/jom/2001/articles/2001-v16n04-p225.shtml

quoting Dr. Prousky from his paragraph on  "The Treatment of Hypo- and Achlorhydria with HCl Supplements"

that (Dr. Prousky  "For the treatment of hypo- and achlorhydria, many clinicians have utilized HCl supplements (either betaine HCl or glutamic acid HCl with or without pepsin). This method requires the use of increasing doses of HCl supplements with meals until gastric tolerance is reached.⁶⁵Gastric tolerance occurs when the patient experiences warmth or a slight burning sensation in the stomach. At this point, the patient would know the total dose of HCl supplements required per meal. Whenever gastric tolerance occurs, the patient would reduce the total dose by one. The patient would be instructed to use fewer capsules with smaller meals and the therapeutic dose (the dose below gastric tolerance) at larger meals."

and I think would make more sense if Dr. Myatt had provided this background information on what it means to reach gastric tolerance.

And why I leave it to doctor's to talk about taking BetaineHCL because it is easy to get burned (if you take a supplement wrong) and prefer to talk about Vitamins/Minerals which usually has a much safer profile with less risk.

I have taken betaineHCL and experienced this gastric tolerance of  a "warm feeling" but it was not intuitive.  I had to play around with how many I took and prefer to take a vitamin if a vitamin like Niacinamide can do the same thing if Prousky's research is correct.

I think taking betaineHCL is much more risky than taking a water soluble vitamins is.

B-Vitamins by their nature are water soluble and one would have to take them for at least 3 to 4 months even at high doses to get too much to usually harm someone.

and even then at high doses 3 or 4 times a day because in 3 to 4 hours your body usually pisses (passes through the kidney's) out any extra you have taken.

If you have ever taken B-2 Riboflavin you have noticed this effect of bright neon colored urine that stops when you stop taking Riboflavin. The yellow color is your kidney's bypassing the extra B-2.

As for a more medical jargon source ( of which I am not) but do a lot of nutrition research because I find it is best to know as much as you can before you take any thing either a vitamin or medicine from a doctor.

See this link http://tgc.amegroups.com/article/viewFile/4364/5233 that talks about the "Effect of gastrointestinal disorders in autoimmune thyroid diseases"

And have excellent summarizes of how often both hypothyroid and hyperthyroid problems occur in Celiac disease.

I tried to copy the Celiac disease paragraph and thyroid disorders but couldn't get the formatting to work properly.

Read it yourself they are very thorough as you would expect any good medical journal to be but I can't say it is an easy read.

Remember **** This is not medical advice and should not be considered such. But I have found if it helps me it usually will help someone else too.

And you could do a lot worse than take  B vitamins.  But I do think it is best too test first so that your own personal doctor can help recover from your deficiency and just as importantly document it.

So others can be helped from your experience.  by documenting it I mean test first for your deficiency before taking a vitamin if a good test is available.

some tests are harder to come by than others.  Vitamin D tests are now fairly routine but are not part of a normal blood test.  you have to ask for the doctor's to check it (Vitamin D) for you.

I don't think my doctor can do it but once or twice a year without a medical reason (if you have been diagnosed with Celiac) as an example and he want's to check your Vitamin D levels... at least he did mine and found them low but never checked again . . . an a few years later I found I was low again.

  It think someone else complained about this on this board/forum. 

They treat then follow up but don't always check back up to see if you are maintaining your levels.

You have to be your own advocate.

I hope this is helpful.

posterboy,

[ravenwoodglass]

 I had lots of other diagnoses before they finally figured out that I was celiac. This will be long.

I was diagnosed before the more accurate DGP tests were available and was a false negative on whatever older tests they did. Something not uncommon with folks that have severe DH. Almost everything resolved in time with the diet. I did need to have physical therapy to help normalize my balance and gait.

As someone with DH please don't supplement with iodine until your DH clears as for some reason it will keep the antibodies active in the skin. Do add it back in when DH clears though as it is an important nutrient.

Before I say what was impacted by celiac I should note that I stopped ALL meds and supplements for a bit before I did a doctor guided elimination diet as I was on so many I needed to know if my symptoms were whatever my disease was or whether some were caused by side effects of the scads of meds they had me taking.  A couple did need to be tapered and I sought my doctors advice on tapering them properly.

Ataxia- which included balance issues so bad I needed Canadian canes to walk or a wall real close.

Aphasia (I couldn't tell you what a fork was if you held one up in front of me).

Memory problems so bad that at times I sat in my car with my keys in my hand and cryed because I couldn't remember what to do with them (never told my doctors as I was afraid they would take away my drivers liesence).

Dragged one leg and nerve conduction tests showed a flat line as almost no signals were getting from my brain to my leg. I still have a bit of lag time on that side but it only affects my typing as one hand moves slower than the other so I often reverse letters. MRI showed multiple brain lesions (UBOs) and it was thought I had MS but spinal tap was clear.   Vitamin B12 in sublingual form helped heal my nerves after diagnosis but it took a very long time.

Migraines- haven't had one since diagnosis unless glutened. I had the pain occasionally but the visual auras were almost constant.

Eye floaters- gone completely

Depression and anxiety-  Depression only shows up when glutened, lasts one miserable day then lifts. I have PTSD so that is still with me but manageable after years of counseling and occasional medication. Celiac likely made it worse but not the original cause in my case.

Severe joint and muscle pain- resolved in time without meds. Before diagnosis I was on 2 meds that were pulled off the market and then Celebrex which didn't really help at all. On rare times now when I need something I take good ole asprin or Aleve.

Fatigue- Constant but expected with all the pain and lack of sleep from nightly D.

Wonky liver panels- doctors thought I was an alcoholic even though I rarely drank and usually would drink NA beer when I did. Liver panels went back to normal soon after diagnosis.

DH- severe still get one or two little blisters when glutened but they resolve quickly. Prediagnosis my face, scalp, legs and arms were in constant state of outbreak.

And of Course IBS- Even though after diagnosis I remarked to my GI how happy I was not to be woken up by violent D every night that would continue for 3 hours and he said 'Gee IBS doesn't do that why didn't you tell me?) I had repeatedly but he wasn't listening.

Osteopenia- That has now progressed to osteoporosis but not unusual for someone my age and have now started taking calcium, better late than never.  This result was from a doctors visit (first in 7-8 years) where I got a full physical and a complete bill of health with the exception of the Osteo.

After diagnosis I took only a stress B&C, sublingual B12 and a multi.  Early on I also took Royal Jelly with a bit of honey a few times a week for energy.

Even after all these years I am amazed at the body's ability to heal itself once the demon gluten is removed.  I know I will never be 100% of the person I would have been if I hadn't been undiagnosed for around 40 or so years but I am so thankful for the recovery I have had and that so many are being dianosed so much sooner now than were even 15 years ago.

[cyclinglady]

6 hours ago, ravenwoodglass said:

 I had lots of other diagnoses before they finally figured out that I was celiac. This will be long.

I was diagnosed before the more accurate DGP tests were available and was a false negative on whatever older tests they did. Something not uncommon with folks that have severe DH. Almost everything resolved in time with the diet. I did need to have physical therapy to help normalize my balance and gait.

As someone with DH please don't supplement with iodine until your DH clears as for some reason it will keep the antibodies active in the skin. Do add it back in when DH clears though as it is an important nutrient.

Before I say what was impacted by celiac I should note that I stopped ALL meds and supplements for a bit before I did a doctor guided elimination diet as I was on so many I needed to know if my symptoms were whatever my disease was or whether some were caused by side effects of the scads of meds they had me taking.  A couple did need to be tapered and I sought my doctors advice on tapering them properly.

Ataxia- which included balance issues so bad I needed Canadian canes to walk or a wall real close.

Aphasia (I couldn't tell you what a fork was if you held one up in front of me).

Memory problems so bad that at times I sat in my car with my keys in my hand and cryed because I couldn't remember what to do with them (never told my doctors as I was afraid they would take away my drivers liesence).

Dragged one leg and nerve conduction tests showed a flat line as almost no signals were getting from my brain to my leg. I still have a bit of lag time on that side but it only affects my typing as one hand moves slower than the other so I often reverse letters. MRI showed multiple brain lesions (UBOs) and it was thought I had MS but spinal tap was clear.   Vitamin B12 in sublingual form helped heal my nerves after diagnosis but it took a very long time.

Migraines- haven't had one since diagnosis unless glutened. I had the pain occasionally but the visual auras were almost constant.

Eye floaters- gone completely

Depression and anxiety-  Depression only shows up when glutened, lasts one miserable day then lifts. I have PTSD so that is still with me but manageable after years of counseling and occasional medication. Celiac likely made it worse but not the original cause in my case.

Severe joint and muscle pain- resolved in time without meds. Before diagnosis I was on 2 meds that were pulled off the market and then Celebrex which didn't really help at all. On rare times now when I need something I take good ole asprin or Aleve.

Fatigue- Constant but expected with all the pain and lack of sleep from nightly D.

Wonky liver panels- doctors thought I was an alcoholic even though I rarely drank and usually would drink NA beer when I did. Liver panels went back to normal soon after diagnosis.

DH- severe still get one or two little blisters when glutened but they resolve quickly. Prediagnosis my face, scalp, legs and arms were in constant state of outbreak.

And of Course IBS- Even though after diagnosis I remarked to my GI how happy I was not to be woken up by violent D every night that would continue for 3 hours and he said 'Gee IBS doesn't do that why didn't you tell me?) I had repeatedly but he wasn't listening.

Osteopenia- That has now progressed to osteoporosis but not unusual for someone my age and have now started taking calcium, better late than never.  This result was from a doctors visit (first in 7-8 years) where I got a full physical and a complete bill of health with the exception of the Osteo.

After diagnosis I took only a stress B&C, sublingual B12 and a multi.  Early on I also took Royal Jelly with a bit of honey a few times a week for energy.

Even after all these years I am amazed at the body's ability to heal itself once the demon gluten is removed.  I know I will never be 100% of the person I would have been if I hadn't been undiagnosed for around 40 or so years but I am so thankful for the recovery I have had and that so many are being dianosed so much sooner now than were even 15 years ago.

What an amazing story (that is not the right word, but i think you understand).  By sharing, you will help so many (as you have been for years).  You are an inspiration!  

I can see why you continue to help so many on this forum.  Not everyone has a classic textbook case of celiac disease.  It is one of the reasons I remain active on this forum too.  

Here's to continued good health!  ?