Protein Deficiency With Celiac

[Jilly]

I was diagnosed with celiac 7 months ago and felt great the first few months. Now I am feeling like I did before diagnosed. I have diarrhea again and feel that my muscles aren't working like they should. When I shower and condition my hair I get handfuls of hair yet it doesn't seem to show any new growth. My nails are rigid brittle and do not grow. If they do grow at all they split in the middle and tear right away. I have had blood work done to determine the celiac but the intestinal tract has never been checked to see how much damage was done. I do not know how long my body was going without the proper nutrients but I do not feel that going gluten free is 100% the answer for me to feel better. I also have another issue and not sure if they are related or not. I was diagnosed with 'autoimmune disease' 2 years ago this month. I woke up with a numbess on the right side of my face and it spread to the remainder of my face and has been there for 2 years. My taste buds are not 100% and the numbness in my mouth makes it hard to speak clearly and drink things from a cup or bottle. I was checked for Bells Palsy and other types of diseases all came up negative. I also have TMJ and think that a nerve got pinched or kinked due to the tmj but the doctors say that they have checked all of that and the numbness in my face is not nerve related. I got a migraine headache for the first time in my life 3 months after the numbness started and also developed what they call renauds in my hands and feet. (all of which are nerve issues) Reading up on Celiac it appears that an autoimmune disease can be diagnosed instead of the celiac (if I read correctly)

Please help me I am getting truly frustrated with the Kaiser system. It seems that I have better luck diagnosing myself than the doctors have - after all I am the one that found out I had celiac and then they tested me for it and determined I had it.

Desperate and wanting to feel healthy again

Jilly

[ShayFL]

First thing that comes to mind is B12. Have they tested this? Plus MMA? Also Iron and Ferritin. Low Ferritin can cause symptoms. Show us your test results and we can help. Or if they didnt test these, they should ASAP.

[ravenwoodglass]

Did they tell you to avoid gluten ingredients in lotions, makeup, shampoos etc? How careful are you about CC? Do you live in a gluten house and share toaster, butter, pnut butter condiments? Do you use a lot of art, craft or home remodeling supplies? All of these need to be checked. Do you consume gluten grain vinegars and alcohols? If you do cut those out for now and challenge them once your symptoms resolve. Many do tolerate them but many also do not. It sounds like you have strong neuro features and I do wholeheartedly agree with getting some for sure gluten-free sublingual B12. That may help a great deal.

One additional note that may or may not apply for you. Some of us replace gluten with soy. That can lead to a reaction from soy based products. I developed both an allergy and intolerance to soy as well as the gluten intolerance and shampoos with soy would cause my hair to fall out in handfuls, just like gluten does. A good gluten free viamin with biotin also would help a bit to resolve this, I used a Country Life vitamin formulated for the hair for quite a while. It can take a long time for regrowth to be obvious, usually about 3 months, so try to be patient.

[veggienft]

Mitochondria are tiny engines within cells which manufacture two things from injested carbohydrates:

1. Adenosine triphosphate (ATP), the fuel of cells

2. Superoxide dismutase (SOD), the repairer of nerves

Combined, this manufacturing process requires two essential building blocks:

1. Alpha lipoic acid for producing ATP (energy)

2. L-carnitine for producing SOD (nerves)

Our bodies heal by replacing cells with new cells .......for all cells except nerve cells. Our bodies repair nerve cells using combinations of SOD.

Your symptoms say you have nerve damage. Nerve damage happens from antigen attack ........wheat gluten, milk casein, varicella zoster virus, Epstein Barr virus, etc. Such problems are systemic. Medical science only tests for them by attempting to test for antibodies. Antibody tests are fraught with failures and false negatives.

"If we can't find it, you don't have it" is provably just horsepucky.

Supplement with l-carnitine. It's not some new-age feelgood herbalism. L-carnitine is a most essential building block of mitochondrial SOD production. Large reputable medical institutions have tested l-carnitine, and are incorporating it into their nerve treatment regimens.

IT WORKS.

..

[ShayFL]

Please go back to your doctor for any blood tests that were not performed. Specifically B12, MMA, Folic Acid, Ferritin and a Full Thyroid Panel. As you can read from this article below about L-carnitine it can worsen a thyroid condition. Which you could have because thyroid issues can cause neurological symptoms. You need to have as many possibilities excluded before you start supplementing at random.

Open Original Shared Link

***Please note to those with neuro issues and thyroid issues that L-carnitine can cause your thryoid hormones to be EVEN less effective. Either your own or medication. ALWAYS research ANYTHING you see on these forums before trying it out.

Also note that taking a single aminio acid can be harmful. They must be balanced. It is recommended that if taking a single amino acid, you should also take an amino acid complex at a different time of day.

[veggienft]

ShayFl's link: Open Original Shared Link

--------------------------------------------------------------

Is L-carnitine safe to take?

Well, based on the facts presented above, the advantages of using the supplement go far beyond potential risks. It is very safe to take as long as you take it in the prescribed dosage. L-carnitine side effects can only prove harmful to you if you do not use it as advised.

--------------------------------------------------------------

People with normal diets get normal amounts of l-carnitine from eating meat. It's hard to imagine that eating meat is dangerous, or requires extraordinary medical tests before consuming it. L-carnitine is required AND INGESTED by EVERYONE, including people with thyroid problems.

I would not advise starting on ANY supplement full-bore. Take small amounts and see how it works. It worked WONDERFULLY in my family.

Conversely, I would hesitate taking advice from anyone whose life consists of following someone around in harassment for no benefit but feeding her ego.

..

[ShayFL]

In my practice, I dealt with many people who took supplements at random based on something they read here or there. It isnt always safe. And taking a single amino acid is not safe for more than a short time (a week or 2). I learned this in my first year of study for my B.A. in Holistic Nutrition. And that information was reinforced many times as I completed my Phd.

I would have responded the same to anyone who posts on this board with information. If I have something to add I ALWAYS will. Every time.

I specialized in thyroid issues and the ways that nutrition can help/harm that organ and system. It was the subject of my dissertation.

When I saw your post and the original poster's symptoms, a light bulb went off and I remembered something. I then looked it up on Google and found my memory was correct.

If you have a thyroid condition, you should take L-carnitine under a doctor's care.

My time spent here is now and has always been in the service of others. So I ignore any sophomoric games.

[burdee]

I was diagnosed with celiac 7 months ago and felt great the first few months. Now I am feeling like I did before diagnosed. I have diarrhea again and feel that my muscles aren't working like they should. When I shower and condition my hair I get handfuls of hair yet it doesn't seem to show any new growth. My nails are rigid brittle and do not grow. If they do grow at all they split in the middle and tear right away.

Please help me I am getting truly frustrated with the Kaiser system. It seems that I have better luck diagnosing myself than the doctors have - after all I am the one that found out I had celiac and then they tested me for it and determined I had it.

Desperate and wanting to feel healthy again

Jilly

Hi Jilly:

Even after a few years off gluten and my other 6 food allergens, I STILL had horrible fingernails (thin, vertical ridges, tear easily). Fortunately I have thick hair. In "Why Stomach Acid is Good for You" Jonathon Wright, MD says that protein deficiency usually manifests in thin, tearing fingernails and/or thinning hair in women. After I started taking betaine hydrochloride capsules before meals to increase my stomach acid, my fingernails finally started improving. I also have more energy. I believe my 'gastritis' misdiagnosis (instead of celiac disease to explain digestive problems) and subsequent 'miss' treatment with acid blockers for too many years impaired my body's production of stomach acid. I suspect I already had decreased stomach acid because I was in my early 40s when most people experienced decreased stomach acid. However acid blockers really messed up my digestion. No, reflux is not caused by too much acid. How many docs ever measure stomach acid before prescribing acid blockers. Our stomachs need high enough levels of stomach acid to close the lower esophageal valve, which leaks acid into the esophagus during 'reflux'. I hope you will consider digestive enzymes with pepsin and hydrochloric acid or at least check out Dr. Wright's book. Betaine hydrochloride relieved so many of my ongoing digestive issues.

I can relate to still struggling after eliminating gluten (and casein). I had to keep testing and reading to resolve my other symptoms, possibly caused by long undiagnosed celiac disease. Keep searching. I wish you luck in your healing journey.

BURDEE

[veggienft]

......And that information was reinforced many times as I completed my Phd.

..........My time spent here is now and has always been in the service of others. So I ignore any sophomoric games.

I don't make it a practice of calling posters out unless they 1. Give out irresponsible advice, and/or 2. Make a HABIT of harassing me.

And this makes about the tenth time you've performed this exact little ego trip on me.

A PhD in "holistic nutrition"? If that's a diagnostic tool, if it gives you authority over other posters, if your "training", and not harassment, is the motive for your post, then why were you able to diagnose the title poster's supposed thyroid problem only after my recommendation, and not in your response to her symptoms?

L-carnitine is a normal part of a normal everyday diet. But it is one of the two most essential parts. L-carnitine gets used up during mitochondrial conversion. Mitochondrial action requires precise membrane integrity. Celiac is essentially a mitochondrial disease, because zonulin permeability interferes with mitochondrial membrane integrity.

When mitochondrial conversion gets broken, and as superoxide dismutase gets used in nerve repair, we must replace the l-carnitine. People with elevated nerve stress, and people like celiac patients are prime candidates for l-carnitine supplementation.

I keep looking for a motive for your harassment. Tell me, how do you and moderator Rachael

[ShayFL]

Jilly,

I really hope you will come back into our forum and not let the recent negative slant of one poster scare you away. The thing I like most about this forum is that most of the people in here are respectful. They can allow for many people to "add" to a thread knowing that there is something of value in the thread as a whole and not necessarily just the opinion of one poster. Most people do not get defensive if someone else has an opinion, experience or offers additional information. The attitude of one poster is not representative of all of us.

Everyone here has experience that has merit and we all come in here to share. Even the negative people might have something that can be helpful to you. Sometimes you just have to wade through the things that are not relevant to you.

For Veggie: First I consciously avoid any thread you post in because I find you very negative and adversarial. Typically I will PM the original poster on any thread you are on now. That's right....far from "following you around"....I actually "avoid" you. I only post if I feel there is a good reason (and something that could harm even one person is enough reason for me). I never once said your information was bad or wrong. I simply gave a warning that if someone had a thyroid condition to use it with caution and under a doctor's care. And several times I advised this poster to check with their doctor and get some more tests. How can you deny a person more information that might be helpful to them? How can you in good conscience ever think a caution is bad? If you could delete my posts would you? If someone with a thyroid condition took your advice and got very sick, could you live with that? Would your satisfaction come only from deleting my posts with no care for the person who could have been helped by them? A caution is just that, think before proceeding. It is extremely arrogant to think that because your family responded to a supplement that everyone will and that you know everything there is to know about L-carnitine. My guess is there are a handful of people in here that know more than both of us combined. And thank goodness for that!

[Amber M]

Jilly,

I really hope you will come back into our forum and not let the recent negative slant of one poster scare you away. The thing I like most about this forum is that most of the people in here are respectful. They can allow for many people to "add" to a thread knowing that there is something of value in the thread as a whole and not necessarily just the opinion of one poster. Most people do not get defensive if someone else has an opinion, experience or offers additional information. The attitude of one poster is not representative of all of us.

Everyone here has experience that has merit and we all come in here to share. Even the negative people might have something that can be helpful to you. Sometimes you just have to wade through the things that are not relevant to you.

For Veggie: First I consciously avoid any thread you post in because I find you very negative and adversarial. Typically I will PM the original poster on any thread you are on now. That's right....far from "following you around"....I actually "avoid" you. I only post if I feel there is a good reason (and something that could harm even one person is enough reason for me). I never once said your information was bad or wrong. I simply gave a warning that if someone had a thyroid condition to use it with caution and under a doctor's care. And several times I advised this poster to check with their doctor and get some more tests. How can you deny a person more information that might be helpful to them? How can you in good conscience ever think a caution is bad? If you could delete my posts would you? If someone with a thyroid condition took your advice and got very sick, could you live with that? Would your satisfaction come only from deleting my posts with no care for the person who could have been helped by them? A caution is just that, think before proceeding. It is extremely arrogant to think that because your family responded to a supplement that everyone will and that you know everything there is to know about L-carnitine. My guess is there are a handful of people in here that know more than both of us combined. And thank goodness for that!

I am new to this site, only posted a several times so far. I would like to say I appreciate everyones advice here and appreciate when someone comes back with warnings because it prevents me from jumping right in to every supplement out of desperation to feel better. I have gone from this site when I read about vitimins and enzymes, etc, to other sources to further research the information before I start any supplement. I think that having a full thyroid panel is for me since it has not been done and I have severe neurol. symptoms too. I think we all need a trained nutritionist. I believe in wholistic medicine as well as conventional especially when some one has been trained in it. I can tell you that I recently discovered that the "supposidly safe" long term usage of acid reducers I have used due to the "wheat burn" have further destroyed my digestive system, which I only learned from reading about enzymes on this forum and further researching them myself. I just started a digestive enzyme and low and behold, my heart burn is already gone. (after 5 years of acid reducers) All of my doctors and the local pharmacy told me long term was okay. I think I'd rather listen to you people and look into the vitimins, etc. I do think it is important to further check out the information here and appreciate the articles posted for further info. We should be able to debate without personal attack! Wholistic medicine may be the track I take as the MD's haven't done a damn for me. I figured out what was wrong before they did. My Allergist is the only one who cared to work with me. Thanks, I've gotten a lot from you S.

[mftnchn]

Jilly,

There have been some good points here. After being gluten-free for almost a year, I discovered via labs that I have many profound deficiencies as I just wasn't absorbing. My doctor has been heavily supplementing since, some by injection, and am feeling better. I agree with Shay that testing and a good doctor are important. At the same time doing your own research is also essential in my opinion--and bringing your ideas to your doctor. Many here have figured things out on their own regarding supplementation--and that's not a bad thing either but safety and understanding the whole picture are important.

Another thing to be aware of is that damage to the villi impacts the ability to make carb digestive enzymes. In my case, after 15 months GFSF and 10 months CF, I was still not digesting carbs and special carb digesting enzyme supplementation was not helping much. My doctor put me on SCD and that has made a big difference. In Scott's celiac newsletter, winter 2003 issue, there is an article on healing that talks about this problem in more detail.

In addition, please also see the thread on lyme disease on this forum. The symptoms can be very similar to celiac and also neurological problems are common. This might be something you need to check out. You need to insist on the Igenex lab for testing though, so not sure what Kaiser will do. Other labs can be as much as only 40% accurate, Igenex has the best record.