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HeatherFeather44

Went to a new Gastro...it went badly

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So I have always been a lurker on this site and have gotten many good ideas etc.  I was diagnosed with Celiacs 8 years ago and have suffered since I was a teenager.  Lets just say that I left this new doctors office in tears and didn’t get anywhere!!  I eat gluten free....and I eat Ketogenically as this is how I feel the best.  My main problems are that I still have a hard time with magnesium absorption and do a lot to help this including Epsom salt baths, magnesium topical spray, etc.  I suffer from constant muscle spasms, pulled muscles, heart palpitations, and easily injure my muscles because of how tense they are.  I also get heartburn, fatigue, and a few other symptoms.I explained this to her and her response was, “this is the life of a celiac, if you can’t handle the stress of it, see a psychiatrist”.  She did a physical exam by putting her stethoscope on my belly in two places very lightly and quickly and said I sound fine.  She then said, “if you are eating 100% gluten free, your symptoms are in your head”.  I asked to have my levels tested to see where my vitamin levels were, my liver, etc and she said that would be a waste of time.  Needless to say, I left crying.  

My questions.....Is anyone eating gluten free (I have been for years) and still have symptoms/discomforts?  I get severe edema if I eat a lot of rice, so went Keto.  She told me I must have allergies and to go see an allergist.  

 

Thoughts?

 

Thank you

(By the way, I am a 44 year old female, no smoking, drinking, but I struggle with 40 lbs of extra weight which I discussed with her to and she said I just need to eat better).

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10 minutes ago, HeatherFeather44 said:

So I have always been a lurker on this site and have gotten many good ideas etc.  I was diagnosed with Celiacs 8 years ago and have suffered since I was a teenager.  Lets just say that I left this new doctors office in tears and didn’t get anywhere!!  I eat gluten free....and I eat Ketogenically as this is how I feel the best.  My main problems are that I still have a hard time with magnesium absorption and do a lot to help this including Epsom salt baths, magnesium topical spray, etc.  I suffer from constant muscle spasms, pulled muscles, heart palpitations, and easily injure my muscles because of how tense they are.  I also get heartburn, fatigue, and a few other symptoms.I explained this to her and her response was, “this is the life of a celiac, if you can’t handle the stress of it, see a psychiatrist”.  She did a physical exam by putting her stethoscope on my belly in two places very lightly and quickly and said I sound fine.  She then said, “if you are eating 100% gluten free, your symptoms are in your head”.  I asked to have my levels tested to see where my vitamin levels were, my liver, etc and she said that would be a waste of time.  Needless to say, I left crying.  

My questions.....Is anyone eating gluten free (I have been for years) and still have symptoms/discomforts?  I get severe edema if I eat a lot of rice, so went Keto.  She told me I must have allergies and to go see an allergist.  

 

Thoughts?

 

Thank you

(By the way, I am a 44 year old female, no smoking, drinking, but I struggle with 40 lbs of extra weight which I discussed with her to and she said I just need to eat better).

It is certainly possible that some of these issues are not related to Celiac or the GI tract.  Did you have your Celiac  antibodies tested?  If they are normal, then maybe you should look for another cause to the other problems.

 

How do you know you aren't getting enough magnesium?  Maybe you should see a general practitioner and talk about your symptoms.  A Gi doesn't treat muscle spasms and heart palpitations. 

 

I have other things that aren't "perfect".  But I don't think this sore elbow or my occasional heartburn is from Celiac

Edited by kareng

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Umm I still have to take insane amounts of magnesium, I take a powdered version in a drink, Natural Vitality Calm, I learned it was best to spread my doses out, I used to use a tsp, but I changed to a scale and measure to the gram. I found my dose by taking it til I got loose stools then I backed it down 2-4grams and vary it by that depending on how I need it. I take 6-8g 3 times a day of it. The suggested dose is 4g or 2 level tsp. Everyone is different in what they need and what they can absorb magnesium works in combination with Calcium, phosphorus, potassium, vitamins B6, C, and D all work synergistic for your body to process. If your on keto try adding in dehydrated kale chips and sprinkling a bit of KAL nutritional yeast over your food, I found this a good way to get many vitamins and use them crushed up as a garnish over eggs etc. Ry-them super foods makes some roasted ones and flavored ones. If you need some help with loosing weight on keto you need to cut back your protein and go to more pure fats, cutting back on meats a bit and going more with avocado, nut butters, eggs, and a bunch of oils. A keotone supplement like that from Julian Bakery first thing in the morning with some BCAAs then a cardio like HITT or 1-2 hour stationary bike run will help you cut out and force your body to burn the fat off and maintain your muscle......I am working to body build on a keto diet myself lol.

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  A GI, based on your symptoms, should do a follow celiac panel to see if your antibodies are down.   A follow-up endoscopy should be considered.  

http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/

I was having issues this past year (diagnosed five years ago).  My celiac antibodies were sky high.  I was getting so discouraged as I am very careful!  I did not go out to eat for a year and even then it was at a 100% dedicated restaurant.  My GI suggested an endoscopy several times, but I resisted.  Finally, I had it done in January of this year.  Amazingly, photos revealed (and a pathologist’s report) healthy villi.  My GI went down pretty far too.  But we discovered that I had chronic gastritis which was not from medications or H. Pylori, so...just another autoimmune issue.  

I am a diabetic and feel best in a low carb high fat diet.  I avoid all grains, because frankly, they spike my blood sugar big time.  If I eat carb dense foods, I chose things like sweet potatoes or spring for ice cream.....watered down with heavy cream.  I do not take any supplements because my GI ran a panel and I am fine.  Besides, my small intestine is healed!  I get my nutrients from food and I know that I am absorbing them because I have healed (though I still have minor intolerances to a few things).  

I am considering the AIP diet for a month or so to see if I can calm down my immune system.  A recent study at Scripps in San Diego showed excellent results in IBD patients.  The only catch is that I would have to give up coffee and dairy.  I just can not make that commitment yet!  

Besides celiac disease, I have Hashimoto’s, autoimmune hives and now, autoimmune gastritis.  What can I do?  Well, try the AIP diet first, before even considering autoimmune drugs (e.g. biologics).  My GI, PCP and Allergist know I am firmly against drugs unless my quality of life becomes very poor.  I tend have many allergic reactions to medications.  All my doctors are supportive.  Please consider getting new doctors!  

 

Edited by cyclinglady

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On 2/15/2018 at 3:44 PM, HeatherFeather44 said:

I suffer from constant muscle spasms,

HeatherFeather44,

You are definitely right to consider magnesium.

Carolyn dean wrote a book called the "Magnesium Miracle" that talked about all the ways being low in Magnesium effects us.

We are said to "waste away" when we are low in Magnesium.

Find a Magnesium Citrate (can cause flushing) or a Magnesium Glycinate (preferred but more expensive) non flushing form.  And since I changed from a Magnesium Citrate to the Magnesium Glycinate my high heart rate has gone down in the last 3 months of/after taking  the Magnesium Glycinate form.

Your muscle cramps will get better.  You will being dreaming when you have reached an effective dose of Magnesium.  2/day and at bedtime works for most people.

The bigger question is why? are you low in the first place.

Most people who have heartburn assume their stomach acid is too high but it is the otherway around.

If stomach acid is too low then when you eat you get get heartburn.

TRUELY high stomach acid bother's you when there is no food in your stomach to lower it.

Actually eating food lowers stomach acid . . . and when already low causes our CARBS to ferment.

Going Keto (no carbs essentially) avoids these issues with fermented instead of digested carbs.

but doesn't alleviate the under lying cause of low stomach acid being misdiganosed at high stomach acid instead.

this article summarizes it well entitled "What's Burning you"?

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

I talked about my experience with low stomach acid being misdiagnosed here in this blog post.

we know it is low stomach acid because the FDA warns on PPI's that overuse of them can cause low magnesium levels.

https://www.fda.gov/drugs/drugsafety/ucm245011.htm

this blog post by Paleleap also is a very good overview of why strong stomach acid is necessary for our mineral absorption.

https://paleoleap.com/why-stomach-acid-is-important-for-bone-health/

You might also be low in Vitamin D which can effect bone strength as well.

I like this article because it highlights not only the low mineral aspects of low stomach over time but they also cover/explain that Vitamin D can also become low in those with low stomach acid.

https://www.huffingtonpost.com/suzy-cohen-rph/acid-reflux-medication-_b_2522466.html

And the source is a pharmacist which says a lot about what she thinks about PPI's and the low stomach acid that results from their (PPI's) long term use.

Taking BetaineHCL can help with your digestion if your stomach acid is already too low.

quoting the 24 hour pharmacist as she is known.

Magnesium — "Reports of hypomagnesemia have occurred with long-term PPI use (greater than 1 year); these drugs block the active transport of magnesium in the intestine, causing low magnesium and resulting in serious pathophysiology including cardiac arrhythmia, muscle spasms, tetany, hypocalcemia, epileptic convulsions (seizures), hypoparathyroidism, depression."

this obviously can be managed in most people with supplementation but it would be better to get off them (PPI's) long term before Hypomagnesemia occurs.

and this is new(s) to me.  I had low Vitamin D when diagnosed with my NCGS/Celiac diagnosis but didn't realize low stomach could be the cause of it.

from the "24 hour pharmacist" again on Vitamin D.

read the whole article when you get a chance.

Vitamin D — "Activation of vitamin D occurs partly in the stomach, and then in the liver. If the acid is reduced in the stomach, complete activation does not occur. Data suggests that cimetidine treatment affects vitamin D levels because one month after cessation of therapy, D levels rose significantly."

which too me is further proof I had low stomach acid undiagnosed and I would say misdiagnosed.

****this is not medical advice I only know it helped me.

I hope this is helpful.

  2 Timothy 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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Cyclinglady and Feeneyja et al,

And/Or To those with thyroid problems.

I began to have some thyroid irregularities when I received my celiac/NGS diagnosis which got better on my gluten free diet but not before I begin taking Zinc and Selenium.

I was already taking Magnesium (so it was probably helping and I didn't know it at the time).

Here is a link that establishes low zinc levels and thyroid problems.

https://www.ncbi.nlm.nih.gov/pubmed/23406177

zinc can be taken as zinc lozenges.  Neatly they self regulate when taken orally as sublinguals under the tongue.

IF the lozenges' taste metallic after 3 or 4 lozenges then your body is telling you have enough zinc.

You might also have "stars" -- white spots in your nail bed if you are low in Zinc.

I  had stars in my nails that went away after supplementing with Zinc.

But with this new research on Magnesium I ran across I wanted to also share Magnesium role in Thyroid health.

according to the NEJM Magnesium has a parathyroid effect.

http://www.nejm.org/doi/full/10.1056/NEJM197001082820203

    What can I do?

so cyclinglady taking magnesium might help your thyroid condition.

Magnesium helps so many things.  there is almost no downside.

Most nuts have Magnesium especially Almonds and Cashews.

They are an even better source of Magnesium when they are chocolate covered.

I did go through a phase where I couldn't get enough Almonds though.

I don't have thyroid problems anymore but I do believe supplementing helped me.  Whether it was Magnesium or zinc or a combination of all three of zinc, magnesium and selenium I will probably never know but I have found when I find the "right" nutrient my health has improved.

***this is not medical advice I only know supplementing helped me.

Oh I forgot to add/mention brazil nuts are a good source of selenium.

I have done the same for brazil nuts.  I would eat them as snack for my daily nut allowance but no longer have a craving for brazil nuts.

And if you want to get more Zinc in your diet naturally Pumpkin seeds are a good source of Zinc.

I hope this his helpful.

2 Timothy 2:7 Consider what I say; and the Lord give thee understanding in all things.

posterboy by the grace of God,

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Wow!! Thank you for all of the answers....I have some data to go over from what you guys have given me and I made an appointment with my primary for this Tuesday to start back at the beginning and get some blood work and testing done and go from there.  Thank you every one and I will let you know what happens.  

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3 hours ago, LaFloyd Hobbs said:

My severe RLS disappeared on a gluten-free diet. I use Gluten Aid (CVS) when the meal is unavoidable and may contain gluten. It works.

Welcome!  

I am glad that your RLS resolved on a gluten free diet.  However, a person who has celiac disease should not use any gluten free “enzyme” supplements to resolve or prevent a celiac flare-up per leading celiac experts.  Learn more:

https://www.allergicliving.com/2017/04/19/reality-check-why-gluten-free-supplements-cant-treat-celiac-disease/

Of course some celiac or NCGS patents insist that these products work.  Personally,  I am saving my money and sticking to  expert recommendations which do work.  My small intestine has healed after following a gluten free diet based on a recent follow-up endoscopy.  

 

Edited by cyclinglady

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3 hours ago, LaFloyd Hobbs said:

My severe RLS disappeared on a gluten-free diet. I use Gluten Aid (CVS) when the meal is unavoidable and may contain gluten. It works.

I have tried some supplement enzymes when I first went gluten free...bloody nightmare. I recently tried the new glidenX ones when I got accidentally glutened....they helped shorten my symptoms that I noticed MUCH less pain, but I still have the long term complications from that glutening....They do not prevent damage, and your still hurting yourself eating gluten while taking them. It just helps you feel better and works as a damage control......ONLY true way for celiacs to heal and stay safe is a stict gluten free diet.....for now waiting for gene editing, intestinal replacement, and star trek food replicators.

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Thank you for the feedback. Luckily, I have only RLS, with no other apparent symptoms, GI or otherwise. However, I agree that the damage in the GI tract (and elsewhere?) may continue even in the absence of symptoms.  There are many facets to gluten toxicity, and using what we already know,  I hope to "connect the dots" for some of those facets.

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What a horrible experience, and I am so sorry that you went through it. Regarding the advice to go to your PCP, not a GI, I remembered how cursorily I was treated (on the whole) at my GI. They were very much oriented, at that time, to the scopes and not much else, though at the same time, it was a few years ago, and my memory might not be putting all the pieces together fairly. Anyway, I can't give you any advice about what you may have or what to do based on what you wrote so far, just empathize with what you went through. I'll give that provider the benefit of the doubt and chalk it up to her having a not so great day (but eegads, telling someone to go to a psychiatrist?!).

Good luck next time!

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6 hours ago, LaFloyd Hobbs said:

Thank you for the feedback. Luckily, I have only RLS, with no other apparent symptoms, GI or otherwise.

LaFloyd Hobbs,

***** let first say this is not medical advice.

but I do a lot nutrition research.  I usually know these things because either I have had these problems once or a friend or family member had this problems.

My mom had your RLS.

there are a couple two or three things that can help.

It comes down to iron . . . or the lack of it in this case.

You will probably want to have your iron levels checked.

here is a good link to the overview of RLS for others who might be reading this.

http://www.ajmc.com/journals/supplement/2012/a409_12aug/a09_12aug_rls_sethi?p=1

quoting

"Iron Deficiency. Iron deficiency has also been repeatedly shown to be associated with RLS."

and iron deficiency anemia can be a hard nut to crack sometimes.  Here after referred to by it's initials ie. IDA especially if you have low stomach acid.

Here is a good thread on it.  Try to read it all when you get a chance.

there are a couple things known to regulate iron absorption and/or it's use in the body.

Beta Carotene can help you absorb Iron.

here is the link entitled "Vitamin A and β-Carotene Can Improve Nonheme Iron Absorption. . .by Humans"

https://academic.oup.com/jn/article/128/3/646/4728862

and once absorbed (or not absorbed if you are having RLS) iron helps with RLS.

here is the link entitled "The role of iron in restless legs syndrome."

https://www.ncbi.nlm.nih.gov/pubmed/17566122

And here is the flying leap and I know I read it somewhere but the amino acid tyrosine helps us regulate it from the article  "The change or reduced CNS iron status produces RLS symptoms largely through its effects on the dopaminergic system and the corollary"  but google has let me down and I can't find a direct study about this. . . but there is a clinical trial to study this effect but I did not see the clinical outcomes at least published on a free access site.

but I think it helps because (only my opinion) and deep research and experience taking tyrosine myself quoting livestrong "tyrosine is metabolized directly to dopamine through a special pathway in the cells." thus helping amplify Irons role and alleviating the RLS symptom's.

here is the livestrong link on Tyrosine relationship to dopamine.

https://www.livestrong.com/article/256233-relationship-between-l-tyrosine-dopamine/

However having RLS symptom's myself I know taking both Magnesium Citrate and Tyrosine helped me.

I know longer take the Tyrosine but do still take Magnesium as Magnesium Glycinate.

I don't think you said but if your are taking PPI"s this might limit your body's ability to absorb iron.

I posted it above but here is a good article about how taking PPI's can limit our absorption of critical minerals like Iron, Magnesium and Calcium to name a few.

https://www.huffingtonpost.com/suzy-cohen-rph/acid-reflux-medication-_b_2522466.html

an this is pharmacist saying that she called PPI's "drug muggers" but you don' have to be taking PPI"s for this to happen.

You just have to have low stomach acid for whatever reason. ..

also see this thread on electrolytes that explains this in more detail.

This (low stomach acid) can be tested by having the doctor do a heidelberg test aka a gastric acid function test.

Some people self treat with BetaineHCL capsules (powdered stomach acid).

If you do do this bee sure to drink plenty of water and always take them with a meal.

For me . . .more was better than less.  I think I probably took  3 or 4 to start with (it has been while) and two more after 30 minutes into my meal.

***** do not do  this (take betaineHCL) without researching this some more for yourself. . .but if you feel a burning sensation then you  either have not taken enough fluid/water or needed to eat more food with them.

food dilutes the betaineHCL and water activates the acid.

I felt a "warm sensation" in my abdomen a sign the powdered SA i had just taken was working.

see this case study on this topic.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4991651/

and see this graph on patient outcomes called figure 1 in the article.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4991651/figure/f1-49-53/

I think it is very instructive to see the patient's timeline to see how taking replacement (much like you do for a thyroid replacement hormones for the missing active biologic process or the way you might take digestive enzymes) stomach acid can help people who have suffered for years with undiagnosed (I would say misdiagnosed) low stomach acid.

I hope this is helpful.

I must stop for now.

I have already posted my story above (scroll back up and read if you have interest) but there is no need.

reading the case study will explain what I did.

****this may not help you and this is not medical advice but I know it helped me.

do not think you will have the same results but I have found when people take replacement stomach acid (powdered stomach acid) supplements they often don't take enough to begin with or don't drink enough water with them.

You have heard the phrase "does it pass the acid test".

Well that is true here too. . .what is left that passes through a strong acid 3.5 pH or less is safe for the body.

With respect to Iron absorption/metabolism and other minerals.  your body must dissolve it before it can absorb it in the small intestine.

I have to stop.

Good luck on your continued journey!

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

posterboy by the grace of God,

ETA: You might also want to stay off dairy and soy for a while.

see this link from american academy of allergy, asthma and immunology

 https://www.aaaai.org/conditions-and-treatments/related-conditions/eosinophilic-esophagitis

quoting so other who might not know.

"Foods such as dairy products, egg, soy and wheat are the main causes of EoE. However allergies to these foods often cannot be easily proven by conventional allergy tests (skin tests, patch tests or blood tests). This is because most food allergy reactions in EoE are delayed, caused primarily by immune mechanisms other than classical IgE-mediated food allergy. Once a causative food has been removed from a person’s diet, symptoms generally improve in a few weeks."

and another friend who has EoE would definitely tell Soy is also a problem for him.

Again I hope this is helpful.

 

 

 

 

 

 

 

 

 

 

 

 

Edited by Posterboy
Added link and added ETA message noting soy might be a problem too!

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Thanks to everyone for the good input. Sometimes it seems we are dealing with more than one disease because symptoms and responses to therapies are so varied. For example, my iron is high normal, but many others have low iron. My potassium and magnesium are normal, but I took a trial of supplements anyway with no improvement in the RLS. I have never had an GI biopsy, so that leaves the door open for being a "silent" celiac. I am interested in developing a database of people with Celiac Disease, RLS, GERD,  and others, listing symptoms, triggers, medications, etc. As soon as I figure out how to keep all data anonymous (but verifiable), I'll start.

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32 minutes ago, LaFloyd Hobbs said:

Thanks to everyone for the good input. Sometimes it seems we are dealing with more than one disease because symptoms and responses to therapies are so varied. For example, my iron is high normal, but many others have low iron. My potassium and magnesium are normal, but I took a trial of supplements anyway with no improvement in the RLS. I have never had an GI biopsy, so that leaves the door open for being a "silent" celiac. I am interested in developing a database of people with Celiac Disease, RLS, GERD,  and others, listing symptoms, triggers, medications, etc. As soon as I figure out how to keep all data anonymous (but verifiable), I'll start.

Will be interesting, the random joker card in this is that those with multiple AI disease sometimes have issues determining which one is flaring without careful deliberation and timing with out symptoms. I have Celiac and Ulcerative colitis along with some pancreas issues and digestion and tons of rolling intolerance troubles. Sometimes my vomiting depending on timing can be any of these. Celiac Vomiting will be coupled with painful lymph nodes (for me), gut pain, numbness, and fog in some cases and be 1-2 hours after eating it. Pancreas enzyme vomiting (not enough to cause digestion/gastric dumping) is 4-5 hours after eating, and UC can be 4-12 hours later when it might either cause D or constipation resulting in vomiting....and it does not always fit these tables and require me to cross reference other symptoms of what is present and what is not...Oh and if it is something I am intolerant to I am vomiting withing 30mins and feel fine after purging with no follow ups.
Diarrhea can result from either Celiac or my UC also, with the Celiac flare followed by a UC flare normally....leading to weeks of trouble with both. I still can not tell the difference here....like alternating tight inflamed intestine with skinny stool/liquid stool with the UC and just liquid and cow pies with the celiac and it rotates for like a week in the brutal tug of war. Don't get me started on supplement and herb regimes for trying to soothe them.

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My difficulty with RLS seems minor compared to what you are having to endure.

All my life I  thought that the knowledge necessary to solve these problems is out there, but it is up to us (maybe someone smarter than I am) to "connect the dots". In any case, now that I am retired, that's what I hope to do.

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2 hours ago, LaFloyd Hobbs said:

My difficulty with RLS seems minor compared to what you are having to endure.

All my life I  thought that the knowledge necessary to solve these problems is out there, but it is up to us (maybe someone smarter than I am) to "connect the dots". In any case, now that I am retired, that's what I hope to do.

Just read up on RLS.....wait that is related? I have not been able to sit still for over 4 years....once I started getting energy back and not being stuck sick or in bed I just could sit still....I assumed it was fear of being stuck unable to move without pain lol. I walk or bike over 16 miles a day and start have anxiety issues if not pacing or pedaling on a stationary bike (even right now on a bike)....Does not bother me at night....Hmm I am taking iron rich foods, eat kale or other leafy greens every meal for vitamin A take vitamin C daily.....I know last blood test still had my iron at like 2......but that was over a year ago....started the vitamin C after that. Hmm just a thought follow up....5 years knowing about this disease and still learning about my own quirks every day.

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I'm wondering if Restless Legs Syndrome is a manifestation of certain enzyme deficiencies in the small intestine. Gluten intake seems to trigger each episode that I have, but RLS does not occur when I take Gluten Aid (protease and amylase) with a meal containing gluten. Other symptoms of gluten intolerance,i.e., Celiac Disease, may be more extreme because it involves additional deficiencies of enzymes whose genes are functioning abnormally and are closely associated or linked to the abnormal protease genes. The literature from neurology and neuropsychiatry is starting to use the term "Gluten Neuropathy" to describe the various peripheral nerve symptoms associated with gluten intake. So, science is moving forward, however, slowly.

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10 hours ago, LaFloyd Hobbs said:

For example, my iron is high normal, but many others have low iron.

LaFloyd Hobbs,

3 hours ago, LaFloyd Hobbs said:

All my life I  thought that the knowledge necessary to solve these problems is out there, but it is up to us (maybe someone smarter than I am) to "connect the dots".

I feel the same way.

I am not smarter than you or anyone else on this board. . . but I have studied nutrition extensively because I had too!

I am actually surprised your Iron is high normal.  . . though my iron was never the problem being a man (it is not usually the problem for men) I did have restless legs and CFS.

It feels much like ants are crawling under your skin  and as Ennis_tx noted you don't notice it much  while you are active . . .unless you rest lay down to sleep and then you continually wake up because your ant's in your veins are active.

Taking Tyrosine can help this.

see this what's burning you link.

http://healthbeatnews.com/whats-burning-you/

the lower you stomach acid get's the lower your nutrients' get because if you can't dissolve them your body can't absorb them.

Amino acids like Tyrosine and Lysine is commonly low when the pH in our stomach is too high.

a gastric acid function test can tell what your pH is .

quoting from healthbeatnews site.

"Jonathan Wright, M.D., well-known and respected holistic physician, states that “Although research in this area is entirely inadequate, its been my clinical observation that calcium, magnesium, iron, zinc, copper, chromium, selenium, manganese, vanadium, molybdenum, cobalt, and many other micro-trace elements are not nearly as well-absorbed in those with poor stomach acid as they are in those whose acid levels are normal. When we test plasma amino acid levels for those with poor stomach function, we frequently find lower than usual levels of one or more of the eight essential amino acids: isoleucine, leucine, lysine, methionine, phenylalanine, threonine, tryptophan, and valine. Often there are functional insufficiencies of folic acid and/or vitamin B12.”

Essential amino acids must be consume daily. . . but the others like tyrosine can be converted (synthesized) from your other amino acids.  But if your stomach acid is low then these will limited as well to a point.

see this link about how phenyalanine and tyrosine are linked.

https://www.ncbi.nlm.nih.gov/pubmed/3766433

and while Iron absorption won't completely stop at a pH of 4.0 or greater it is greatly limited (especially without beta carotene) see above link that explains how beta caroten makes Iron soluble at a higher pH it is greatly limited for most people.

Granted this is not a one to one relationship.

Copper also effects Iron status.  And Zinc effects copper status etc.

But for most people a pH of 4.0 greatly limits Iron Absorption because it becomes insoluble above a pH of 4.0 unless other co-agents or  chelators influence it solubility point.

Think the way salt effects the roadway to lower the freezing point of ice.

While Iron can be absorbed above a  pH of 4.0 normally this is the cut-off point.

see this link that explains why this is .   . . entitled Interactions of pH and ascorbate in intestinal iron absorption

https://www.ncbi.nlm.nih.gov/pubmed/6655517

quoting the relative section.

"the pH of the lumen had climbed above pH 4, where Fe3+ is insoluble; reached 6.8 by 10-15 minutes. In parallel with rising pH, mucosal Fe uptake ceased by 5 minutes after its administration. . . The results demonstrate the dramatic effects of pH on iron bioavailability, in the absence of chelators such as ascorbate, and the importance of considering iron solubility in measurements of iron absorption."

so in summary pH alone does not entirely limit Iron absorption if other important chelating factors are also present like Beta Carotene or other essential amino acids but it greatly limits its bioavability.

But take some Tyrosine it can help your RLS.  I do highly recommend Magnesium Citrate or Magnesium Glycinate as well.

Magnesium naturally helps relax blood vessels 10 percent and does the natural vasodilator Niacin (Vitamin B-3).  If your BP is high then taking Folic Acid can also keep blood vessels relaxed.

I recommend usually the Niacinamide form of B-3 for most people (the non-flushing form) but Niacin might help you because the flushing you get at about 100mgs is not too intolerable and very mild when taken with a meal.

Take 100mg tablets with each meal and over two or three days the flushing will go away.  This opens your blood vessels/capillaries naturally allowing more air/oxygen in your veins and this also might relieve some of the stress from RLS.

(this is only my opinion) I have no idea if the Niacin will work in this way but I know the tyrosine has been proven to help RLS and greatly relieved the crawling inside my veins especially prominent in my legs below the knees typically in the calf area of the leg.

Amino acids are not stored in the body for more than 24 hours so twice a day works well when taking Tyrosine.

**** as always this is not medical advice but I hope it is helpful.

Again I don't now take tyrosine now because my stomach acid is now strong enough to digest proteins so that I can metabolize (absorb) the amino acids in my small intestine.

2 Timothy 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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On 2/15/2018 at 4:44 PM, HeatherFeather44 said:

So I have always been a lurker on this site and have gotten many good ideas etc.  I was diagnosed with Celiacs 8 years ago and have suffered since I was a teenager.  Lets just say that I left this new doctors office in tears and didn’t get anywhere!!  I eat gluten free....and I eat Ketogenically as this is how I feel the best.  My main problems are that I still have a hard time with magnesium absorption and do a lot to help this including Epsom salt baths, magnesium topical spray, etc.  I suffer from constant muscle spasms, pulled muscles, heart palpitations, and easily injure my muscles because of how tense they are.  I also get heartburn, fatigue, and a few other symptoms.I explained this to her and her response was, “this is the life of a celiac, if you can’t handle the stress of it, see a psychiatrist”.  She did a physical exam by putting her stethoscope on my belly in two places very lightly and quickly and said I sound fine.  She then said, “if you are eating 100% gluten free, your symptoms are in your head”.  I asked to have my levels tested to see where my vitamin levels were, my liver, etc and she said that would be a waste of time.  Needless to say, I left crying.  

My questions.....Is anyone eating gluten free (I have been for years) and still have symptoms/discomforts?  I get severe edema if I eat a lot of rice, so went Keto.  She told me I must have allergies and to go see an allergist.  

 

Thoughts?

 

Thank you

(By the way, I am a 44 year old female, no smoking, drinking, but I struggle with 40 lbs of extra weight which I discussed with her to and she said I just need to eat better).

Wow, the arrogance of that doctor. 

If you have diabetes (autoimmune type 1) and you tell your MD, "doctor I'm getting funny pins and needles in my feet" that's part of diabetes, neuropathy.  You don't tell that patient, "if you're having foot problems, and you're taking your insulin, then the pins and needles are in your head." 

Celiac, like other autoimmune illnesses have downstream effects that don't manifest until later.  Dump that doctor, in fact, if you have the time,  call the med board and ask if they've had issues with that doctor before.  Tell them what she told you.  Maybe nothing will come of it, but at least the truth is where it needs to be. 

Definitely time for a new gastro in your life though. 

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On 3/12/2018 at 9:07 AM, LaFloyd Hobbs said:

I am interested in developing a database of people with Celiac Disease, RLS, GERD,  and others, listing symptoms, triggers, medications, etc. As soon as I figure out how to keep all data anonymous (but verifiable), I'll start.

The Celiac Disease Foundation already has a database for Celiac/NCGS.  It is pretty detailed and does ask questions about other auto-immune diseases, symptoms, etc. You can find more information here: https://icure.celiac.org/ . 

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