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Randilee

Sensitive Extremities

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Hi there,

I was recently diagnosed with Celiac after having dramatic weight loss, extreme fatigue, digestive issues, and a variety of other things. The blood test and biopsy both came back positive so I have been following a strict gluten free diet. 

I have been experiencing muscle spasms, frequent face redness all over, and as of lately my toes and fingers have been turning different colours. The most concerning would be my toes as they will go purple. Each toe looks like it has a bruise on it. Is this symptomatic of celiac? I followed up with my family doctor but his only suggestion was to see a dietician, and out I went. 

My antibody came back positive, and the titre was high and speckled. Is this related to the celiac? Not much has been explained to me, and I am just trying to understand further!

If anyone has any advice, or comments I would be glad to read them! 

 

Thank you :) 

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10 minutes ago, Randilee said:

Hi there,

I was recently diagnosed with Celiac after having dramatic weight loss, extreme fatigue, digestive issues, and a variety of other things. The blood test and biopsy both came back positive so I have been following a strict gluten free diet. 

I have been experiencing muscle spasms, frequent face redness all over, and as of lately my toes and fingers have been turning different colours. The most concerning would be my toes as they will go purple. Each toe looks like it has a bruise on it. Is this symptomatic of celiac? I followed up with my family doctor but his only suggestion was to see a dietician, and out I went. 

My antibody came back positive, and the titre was high and speckled. Is this related to the celiac? Not much has been explained to me, and I am just trying to understand further!

If anyone has any advice, or comments I would be glad to read them! 

 

Thank you :) 

This could be related to nutrient deficiencies such as multip B-vitamins, magnesium, primarily with some others to consider like vitamin D E and iron. But my concern with be diabetes also, it is a fact that diabetes and celiac go hand in hand often. AND if you eat gluten free processed food often you are eating a ton more starch, carbs, and sugars then you need to which could make this worse. I would really suggest seeing a doctor about this as it seems to be a really serious issue. Discoloration is a blood flow issue normally.....this could lead to complications and loss/amputation of you your extremities. Again my main concern would be diabetes, if you want to help keep track of this get a glucose monitor from walmart and check you blood glucose before and a at the 30, 60, 90, 120min mark after a meal for a week monitor the results and see about taking them to a doctor. If your seeing large spikes and drops between and after meals this could be a sign of something. (again observational data not a doctor here  but info to help). You can try supplementing B-vitamin complexes and magnesium also help but PLEASE talk to a doctor on this issue. Change to a whole foods only diet for awhile and see about cutting out processed foods, sugars, and going easy on the carbs.

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29 minutes ago, Ennis_TX said:

This could be related to nutrient deficiencies such as multip B-vitamins, magnesium, primarily with some others to consider like vitamin D E and iron. But my concern with be diabetes also, it is a fact that diabetes and celiac go hand in hand often. AND if you eat gluten free processed food often you are eating a ton more starch, carbs, and sugars then you need to which could make this worse. I would really suggest seeing a doctor about this as it seems to be a really serious issue. Discoloration is a blood flow issue normally.....this could lead to complications and loss/amputation of you your extremities. Again my main concern would be diabetes, if you want to help keep track of this get a glucose monitor from walmart and check you blood glucose before and a at the 30, 60, 90, 120min mark after a meal for a week monitor the results and see about taking them to a doctor. If your seeing large spikes and drops between and after meals this could be a sign of something. (again observational data not a doctor here  but info to help). You can try supplementing B-vitamin complexes and magnesium also help but PLEASE talk to a doctor on this issue. Change to a whole foods only diet for awhile and see about cutting out processed foods, sugars, and going easy on the carbs.

Hi there, 

I eat a very clean unprocessed diet, and was this way before I was diagnosed with celiac. The most processed my foods get is just having two pieces of toast in the morning.

Before I was diagnosed with celiac they had me monitoring my blood sugars, but did not seem to think it was diabetic. I will definitely talk to my doctor about vitamin deficiencies and hope he will take it more seriously! 

Thank you for the prompt feedback!

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Can you get a copy of your bloodwork and the results and ranges so we can tell what has already been run? We have some folks really knowledgable about lab work that might be able to give some insight or let you know what other tests to have your doctor run.  I agree with Ennis that this should be followed up on.  When your fingers and toes get purpleish have they been exposed to the cold? It could be Raynauds which isn't serious, as far as I know. Do try some supplements, making sure they are gluten free and bring them with you to any doctors appointments. To get accurate levels you may need to stop some for a bit before the doctor checks.

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Ravenwood may be on to something there.  Check out the Mayo clinic link for more info on Raynauds syndrome.  Raynaud's Syndrome is another autoimmune condition as is celiac disease.

https://www.mayoclinic.org/diseases-conditions/raynauds-disease/symptoms-causes/syc-20363571

Raynaud's (ray-NOHZ) disease causes some areas of your body — such as your fingers and toes — to feel numb and cold in response to cold temperatures or stress. In Raynaud's disease, smaller arteries that supply blood to your skin narrow, limiting blood circulation to affected areas (vasospasm).

Women are more likely than men to have Raynaud's disease, also known as Raynaud or Raynaud's phenomenon or syndrome. It appears to be more common in people who live in colder climates. ... continues...

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I got diagnosed with POTS after celiac diagnosis. I get Raynaud's phenomenon, muscle cramps/spasms, and had hives for a year and half. I'm not sure if there is any correlation between the symptoms but a lot of celiacs have multiple issues

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16 minutes ago, ccrew99 said:

I got diagnosed with POTS after celiac diagnosis. I get Raynaud's phenomenon, muscle cramps/spasms, and had hives for a year and half. I'm not sure if there is any correlation between the symptoms but a lot of celiacs have multiple issues

IF your still getting cramps look into supplementing with Magnesium, either Natural Vitality Calm or Doctors best in the glycinate powder. Depending on other symptoms and the way your body works depends on which form is best. Calm is best if you have hard stools, do not go daily with a BM you start it off small 1/4tsp and work it up to the full dose over a week or two. If you get loose stools cut back as you dose this to tolerance. Doctors best is easier on the stomach and will not cause D or loose stools like Calm but can cause you to really relax too much and cause very vivid dreams (this is a good sign that it is working) You will notice the cramps lessen with both of these. The cramps in combination with the numbness is a sign of magnesium deficiency which is caused by your damaged intestines normally and can be made worse by PPIs and a few other issues.

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4 hours ago, Randilee said:

If anyone has any advice, or comments I would be glad to read them! 

They have all given you good advice.

Like Ennis_Tx said this is not medical advice.

Just some observations.

Ennis_Tx mentioned already a good B-complex.

But people who have Perncious Anemia low B-12 have "Pens and Needles' feeling in their extremities.

Mine was much more pronounced when sleeping. . . while sleeping my nerve ending would go to sleep.

This would wake me from my sleep.  I would shake them awake/loose much like a leg that had fallen asleep while awake.  We have all felt that feeling before except the whole side of body's nerve ending would tingle/fall asleep enough to wake me from my sleep.

Once taking a homocysteine tablet (B6,b12 and folic acid) tablet call FABB for the abbreviated ingredients under doctor's supervision this "pens and needles' went away.

This also happened in my finger and toe tips while awake as if I had pinched a nerve in my back.

These sensations are now in remission.

Also if you think it is Rynaud's then try Niacin or Niacinamide.  It is a natural vasodialotor and the 'warm sensation" people take when using Niacin especially in a work out supplement is Niacin they add to enhance athletic performance for body builders.. . . because this opens capillaries approx. 10 % more allowing more air into the muscles thus improving their work out.

This flushing goes away after a couple days of using Niacin.  The Niacinamide form does not flush the way the Niacin form does but provides the same benefit.

Both Niacinamide and Magnesium each lower blood pressure approx. 10% each this way.  But if BP is a real problem for you  take the Homocysteine tablet mentioned above or just Folic Acid by itself.

My BP is now normal after taking Folic Acid because it controls' how/what triggers constriction in our blood vessels thus effectively controlling BP.

These are some times that I have used to improve my circulation.

*** again this is not medical advice just things that have helped me with similar issues.

 I hope this is helpful.

2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

posterboy by the grace of God,

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My kid has Raynauds.  It freaks her classmates out.  She wears shoes and wool socks all year round and we live in a warm state.  It is autoimmune.  She manages it by layering, turning up the heat, use lots of blanket throws.  

I have Hashimoto’s and celiac disease.  So, having multiple autoimmune issues is common.  

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4 hours ago, ccrew99 said:

I got diagnosed with POTS after celiac diagnosis. I get Raynaud's phenomenon, muscle cramps/spasms, and had hives for a year and half. I'm not sure if there is any correlation between the symptoms but a lot of celiacs have multiple issues

It sounds like your hives resolved.  I had a six month bout with them.  Antihistamines really helped.  My doctors are not sure if Mast Cell or autoimmune is the root cause.  

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I suddenly remembered a TV commercial from the 50's watching Arthur Godfrey or someone. Something like this: "Tired, run down? You may have Iron Poor Blood. Get Geritol and get your energy back!" At least that is what I heard in my head. So I bought a bottle, real cheap. The effect for the first week was like drinking a 5 Hour Energy. More than met my expectation. Then it leveled off and that was good, then I got constipated and had to stop taking it. It had taken a week to bring my B's and Iron to normal then I guess it was too much. I am going to restart but this time instead of one tablespoon a day as recommended, less often, maybe once a week. I have the cold feet and positional tingling and am tired all the time and my blood pressure is higher than it should be. We'll see. Thank you all for inspiring me to try again.

On ‎1‎/‎22‎/‎2018 at 7:04 PM, Randilee said:

I followed up with my family doctor but his only suggestion was to see a dietician, and out I went. 

He may have saved your life. It got you here. Be sure to find a dietician familiar with the ravages of wheat, I think most are still in denial.

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17 hours ago, Wheatwacked said:

I suddenly remembered a TV commercial from the 50's watching Arthur Godfrey or someone. Something like this: "Tired, run down? You may have Iron Poor Blood. Get Geritol and get your energy back!" At least that is what I heard in my head. So I bought a bottle, real cheap. The effect for the first week was like drinking a 5 Hour Energy. More than met my expectation. Then it leveled off and that was good, then I got constipated and had to stop taking it. It had taken a week to bring my B's and Iron to normal then I guess it was too much. I am going to restart but this time instead of one tablespoon a day as recommended, less often, maybe once a week. I have the cold feet and positional tingling and am tired all the time and my blood pressure is higher than it should be. We'll see. Thank you all for inspiring me to try again.

He may have saved your life. It got you here. Be sure to find a dietician familiar with the ravages of wheat, I think most are still in denial.

Do you mean this, or the pill form? Interested in trying it!

Geritol Liquid Energy Support, High Potency B-Vitamin & Iron Liquid Supplement

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31 minutes ago, Victoria1234 said:

Do you mean this, or the pill form? Interested in trying it!

Geritol Liquid Energy Support, High Potency B-Vitamin & Iron Liquid Supplement

AVOID it, it uses Brewers Yeast from beer brewing....as in not gluten free. Go with Liquid Health Supplements instead. And Nutrional Yeast which is different is a great source of vitamins. I use KAL for this.

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3 hours ago, Victoria1234 said:

Do you mean this, or the pill form? Interested in trying it!

Geritol Liquid Energy Support, High Potency B-Vitamin & Iron Liquid Supplement

A good stess B should help a bit. Do have your doctor check your iron levels before taking iron supplements as too much is toxic to the liver and in many with celiac the liver is negatively impacted until healed. When the doc checks your iron have them also check your B12 levels and D. Hope you are feeling better soon.

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I am using the liquid. Better control. So, after two doses I am recognizing significant improvement. Specifically my perceived toe and foot temperature has improved. They do not feel as cold, numbness is improving. Early days but looking good.

Brewers yeast is a form of yeast, so I do not think there is a gluten concern, just because it is also used in beer. And there are gluten free beers.  It does have soy listed if you are avoiding soy. I like it because it is cheap, it works, though I am going to use it much less than the recommended. I've never heard anything bad about it in particular and after all these years on the market you would think. I use Cod's Liver Oil for the same reason, cheap excellent source of vitamin A, Omega 3 and vitamin D. The cherry flavor is not bad (well not good either) and I daily picture Alfalfa holding his nose in front of a spoonful.

On ‎1‎/‎25‎/‎2018 at 6:15 PM, ravenwoodglass said:

When the doc checks your iron have them also check your B12 levels and D.

Insist on iodine levels, also. Low iodine will cause healing as well as energy issues and you are likely deficient. Is there such a thing as a Nutrition Panel of blood tests like for Lipids?

As you heal you will likely identify other symptoms of malabsorption.

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4 hours ago, Wheatwacked said:

 

Brewers yeast is a form of yeast, so I do not think there is a gluten concern, just because it is also used in beer.

Brewer's yeast is a by-product of beer brewing so it is usually contaminated with barely malt. Safest to use something that is for sure gluten free.  If you only avoid wheat then it should be fine for you but someone with celiac is best to avoid brewer's yeast.  I notice you usually only mention avoiding wheat. If someone is celiac they also need to avoid barley, including barley malt, rye and oats that are not specifically gluten free.

In addition if you have DH you need to be careful with iodine as it keeps the antibodies active in the skin. Once the skin clears then a good gluten-free vitamin with iodine is a good idea as iodine is an important nutrient.  This only applies to those with the skin form of celiac, DH.

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8 hours ago, Wheatwacked said:

I am using the liquid. Better control. So, after two doses I am recognizing significant improvement. Specifically my perceived toe and foot temperature has improved. They do not feel as cold, numbness is improving. Early days but looking good.

Brewers yeast is a form of yeast, so I do not think there is a gluten concern, just because it is also used in beer. And there are gluten free beers.  It does have soy listed if you are avoiding soy. I like it because it is cheap, it works, though I am going to use it much less than the recommended. I've never heard anything bad about it in particular and after all these years on the market you would think. I use Cod's Liver Oil for the same reason, cheap excellent source of vitamin A, Omega 3 and vitamin D. The cherry flavor is not bad (well not good either) and I daily picture Alfalfa holding his nose in front of a spoonful.

Insist on iodine levels, also. Low iodine will cause healing as well as energy issues and you are likely deficient. Is there such a thing as a Nutrition Panel of blood tests like for Lipids?

As you heal you will likely identify other symptoms of malabsorption.

You do not seem to understand that  a Celiac must avoid barley and rye as well as wheat.  Brewer's yeast is on the list of foods to avoid because, usually, it contains barley.  It is a by-product of beer making.  There are so few gluten-free beers around that you should never assume this brewer's yeast came from a gluten-free beer.

http://www.cureceliacdisease.org/faq/is-yeast-extract-gluten-free/

I know that you are here with a "wheat is evil" agenda.  But most people on here are just trying to learn about Celiac and that is more than just about wheat.

 

 

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17 hours ago, kareng said:

You do not seem to understand that  a Celiac must avoid barley and rye as well as wheat.

I am sorry if I give that impression. I have never voluntarily eaten barley, hate it. Barley is a wheat like grass and rye is a wheat grass. I clump them all together as wheat. I will try to avoid that.

I also believe that it not just the gluten causing diseases, there are other problematic proteins in the wheat grasses, especially in commercial wheat.  It is a major causal factor in our current health crisis, and that connection is being buried. It is essentially a slow poison. No one should eat it.

23 hours ago, ravenwoodglass said:

Brewer's yeast is a by-product of beer brewing so it is usually contaminated with barely malt

 Brewer's yeast is named so because it comes from the same fungus that's used to ferment and make beer – Saccharomyces cerevisiae.

Some companies grow it on barley, others do not. Case by case, thanks for pointing it out. Yes being celiac is not easy.

found this on the Geritol Website.

"Is Geritol® multivitamin gluten-free?

 

Yes. Although it is not stated on the bottle, the ingredients in Geritol® multivitamin are gluten-free.

 geritol-gluten-free-multivitamin

The “gluten-free” seal is appearing on more and more food products and supplements in the grocery aisles, so you might be wondering why. There is a growing awareness of celiac disease, as well as gluten intolerance, where the body launches an immune response in the presence of the gluten protein. The only medically accepted treatment for celiac disease is the adoption of a gluten-free diet. Gluten is found in common grains, such as wheat and rye, but is also present in unlikely foods and products as a stabilizer or thickening agent.

 

If you are looking for a gluten-free multivitamin, Geritol® multivitamin is a prime, well-balanced choice for those with celiac disease."

On ‎1‎/‎23‎/‎2018 at 12:58 AM, cyclinglady said:

 She wears shoes and wool socks all year round and we live in a warm state.

Geritol does make my cold numb feet feel warmer. Women are more prone to iron deficiency, and if it hasn't been checked already, a place to start. Even though you are in a warm state, I bet she spends a majority of time in air conditioning. I was always cold and would go outside as often as I could just to warm up. I've had cold wet feet my whole life.

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    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023

    Jefferson Adams
    Celiac.com 06/13/2018 - There have been numerous reports that olmesartan, aka Benicar, seems to trigger sprue‐like enteropathy in many patients, but so far, studies have produced mixed results, and there really hasn’t been a rigorous study of the issue. A team of researchers recently set out to assess whether olmesartan is associated with a higher rate of enteropathy compared with other angiotensin II receptor blockers (ARBs).
    The research team included Y.‐H. Dong; Y. Jin; TN Tsacogianis; M He; PH Hsieh; and JJ Gagne. They are variously affiliated with the Division of Pharmacoepidemiology and Pharmacoeconomics, Department of Medicine, Brigham and Women's Hospital and Harvard Medical School in Boston, MA, USA; the Faculty of Pharmacy, School of Pharmaceutical Science at National Yang‐Ming University in Taipei, Taiwan; and the Department of Hepato‐Gastroenterology, Chi Mei Medical Center in Tainan, Taiwan.
    To get solid data on the issue, the team conducted a cohort study among ARB initiators in 5 US claims databases covering numerous health insurers. They used Cox regression models to estimate hazard ratios (HRs) and 95% confidence intervals (CIs) for enteropathy‐related outcomes, including celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy. In all, they found nearly two million eligible patients. 
    They then assessed those patients and compared the results for olmesartan initiators to initiators of other ARBs after propensity score (PS) matching. They found unadjusted incidence rates of 0.82, 1.41, 1.66 and 29.20 per 1,000 person‐years for celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy respectively. 
    After PS matching comparing olmesartan to other ARBs, hazard ratios were 1.21 (95% CI, 1.05‐1.40), 1.00 (95% CI, 0.88‐1.13), 1.22 (95% CI, 1.10‐1.36) and 1.04 (95% CI, 1.01‐1.07) for each outcome. Patients aged 65 years and older showed greater hazard ratios for celiac disease, as did patients receiving treatment for more than 1 year, and patients receiving higher cumulative olmesartan doses.
    This is the first comprehensive multi‐database study to document a higher rate of enteropathy in olmesartan initiators as compared to initiators of other ARBs, though absolute rates were low for both groups.
    Source:
    Alimentary Pharmacology & Therapeutics

    Jefferson Adams
    Celiac.com 06/12/2018 - A life-long gluten-free diet is the only proven treatment for celiac disease. However, current methods for assessing gluten-free diet compliance are lack the sensitivity to detect occasional dietary transgressions that may cause gut mucosal damage. So, basically, there’s currently no good way to tell if celiac patients are suffering gut damage from low-level gluten contamination.
    A team of researchers recently set out to develop a method to determine gluten intake and monitor gluten-free dietary compliance in patients with celiac disease, and to determine its correlation with mucosal damage. The research team included ML Moreno, Á Cebolla, A Muñoz-Suano, C Carrillo-Carrion, I Comino, Á Pizarro, F León, A Rodríguez-Herrera, and C Sousa. They are variously affiliated with Facultad de Farmacia, Departamento de Microbiología y Parasitología, Universidad de Sevilla, Sevilla, Spain; Biomedal S.L., Sevilla, Spain; Unidad Clínica de Aparato Digestivo, Hospital Universitario Virgen del Rocío, Sevilla, Spain; Celimmune, Bethesda, Maryland, USA; and the Unidad de Gastroenterología y Nutrición, Instituto Hispalense de Pediatría, Sevilla, Spain.
    For their study, the team collected urine samples from 76 healthy subjects and 58 patients with celiac disease subjected to different gluten dietary conditions. To quantify gluten immunogenic peptides in solid-phase extracted urines, the team used a lateral flow test (LFT) with the highly sensitive and specific G12 monoclonal antibody for the most dominant GIPs and an LFT reader. 
    They detected GIPs in concentrated urines from healthy individuals previously subjected to gluten-free diet as early as 4-6 h after single gluten intake, and for 1-2 days afterward. The urine test showed gluten ingestion in about 50% of patients. Biopsy analysis showed that nearly 9 out of 10 celiac patients with no villous atrophy had no detectable GIP in urine, while all patients with quantifiable GIP in urine showed signs of gut damage.
    The ability to use GIP in urine to reveal gluten consumption will likely help lead to new and non-invasive methods for monitoring gluten-free diet compliance. The test is sensitive, specific and simple enough for clinical monitoring of celiac patients, as well as for basic and clinical research applications including drug development.
    Source:
    Gut. 2017 Feb;66(2):250-257.  doi: 10.1136/gutjnl-2015-310148.