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Oneloved

Non-stop Itching / Skin Crawling, No Rash

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3 hours ago, Oneloved said:

An endoscopy showed that we healed her gut successfully, so a biopsy would be pointless (thank God).  

Was this instead of a blood test? Was it done twice? (Sounds like there was damage that she healed from that was seen previously.)

im sure you know that lots of people don't show any damage but show positive on blood. And vice versa. And you need the biopsy so they can look at the microscopic villi. 

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2 minutes ago, Victoria1234 said:

Was this instead of a blood test? Was it done twice? (Sounds like there was damage that she healed from that was seen previously.)

im sure you know that lots of people don't show any damage but show positive on blood. And vice versa. And you need the biopsy so they can look at the microscopic villi. 

There was only one endoscopy done, when they were trying to figure out why she was still having constipation issues after years of being gluten-free.  

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2 hours ago, Oneloved said:

I hate to admit it, but I think you're right.  We do need a formal diagnosis.  I just know that she'll be constipated with stomach cramps within a day, and I can't imagine torturing her like that for weeks.  Ugh.  There's GOT to be a better way! 

You can order a HLA genetic test online, but I haven't seen a home test for celiac antibodies.  

A recent blood panel showed that her neutrophils and overall white blood cell count was a little low, but they didn't seem concerned.  

I think this is one lab.  You order, go to a designated local lab for the blood draw and you are done.    I have never done this, so call and confirm.  Read online reviews, etc.  

https://www.directlabs.com/mobile/Home/tabid/15890/language/en-US/Default.aspx

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walkinlab.com is where I go these days. It's called Celiac Disease Comprehensive. It costs $298.00 and is not covered by insurance. The test is done at your nearest Labcorp and results appear at walkinlab.com in less than a week. What I don't know is if online places can be used for children or if it's only for adults. You would have to ask.

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2 hours ago, Oneloved said:

Is DH usually localized?  My daughter's symptoms are all over her body.  

Dh can present anywhere on the body but a hallmark of it is that it almost always presents bilaterally. It echoes itself from one side of the body to the other. IOW, both arms, both legs, both elbows, all the way around the neck or each side of the neck...... you get the picture. Yes, it can present body wide.

Here's a photo of my legs at one point. You can see how it's duplicated itself from one side to the other.

 

DSC05218.JPG

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8 minutes ago, tessa25 said:

walkinlab.com is where I go these days. It's called Celiac Disease Comprehensive. It costs $298.00 and is not covered by insurance. The test is done at your nearest Labcorp and results appear at walkinlab.com in less than a week. What I don't know is if online places can be used for children or if it's only for adults. You would have to ask.

The prep says no fasting, but wouldn't this kind of test require a "gluten challenge" for several weeks prior?  

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6 minutes ago, Oneloved said:

The prep says no fasting, but wouldn't this kind of test require a "gluten challenge" for several weeks prior?  

The prep doesn't discuss challenges. The challenge duration would typically be decided by your doctor. If you're testing to see if she has celiac the recommendation by the celiac experts is at least one slice of bread per day for 12 weeks. If you're testing for compliance with the gluten free diet or testing to see if numbers have gone down because of a gluten free diet then there is no challenge. My testing is to verify that my numbers are still heading down to normal levels.

When ordering your own blood tests you are expected to do your own research.

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I suggested testing her now for dietary compliance.   No one should ever do a gluten challenge without being under a doctor's care and preferably a gastroenterologist.  It can be dangerous!  

Tessa is right.  You have to be able to do your own research and make good safe decisions.  It is obvious that you are not a celiac expert.   You are not a doctor.  The lab expects you to be knowledgeable.    Please, please, consult with a medical doctor.  

Edited by cyclinglady

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6 hours ago, Oneloved said:


I first got suspicious when my second daughter's baby teeth started coming in with incomplete enamel.  She wasn't absorbing the nutrients she needed, and had to get a double root canal at 20 months.  Still, three of my children only get diarrhea when they cheat.  It's my third daughter, 7, who has had serious problems from the moment I weaned her, falling off the growth chart, wavering between constipation and uncontrollable diarrhea, skin and hair showing signs of malnutrition, developing Cyclic Vomiting Syndrome, and other issues.  



 

Oneloved, you said earlier your daughter showed signs of malnutrition.

Has anything been done to correct the malnutrition?  Has your daughter been tested for vitamin and mineral deficiencies?  Is she taking any vitamin supplements now, besides the magnesium?  Since dairy has been removed from her diet, is she on calcium supplements?  

Magnesium needs to be balanced with zinc and calcium.  A deficiency in zinc can cause neuropathy, as can deficiencies of some of the eight B vitamins, like niacin and B12.  Vitamin D deficiency manifests as poor dental enamel, stunted growth, and constipation.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4199287/#!po=1.04167

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4208100/

I had "itchies" like you described your daughter has.  It was due to malnutrition.  Symptoms were ignored by my doctors who thought I was a hypochondriac.  I became severely ill because I was not absorbing nutrients efficiently.  

Celiac Disease causes malabsorption which results in malnutrition.  Sometimes supplementation is necessary to correct deficiencies until one can heal enough to be able to absorb nutrients.

The importance of correcting nutritional deficiencies is often overlooked by the medical profession. Especially since your daughter has had severe diarrhea and vomiting, she should be checked for vitamin and mineral deficiencies, if she hasn't been checked already.  

Hope this helps.

 

 

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1 hour ago, knitty kitty said:

Oneloved, you said earlier your daughter showed signs of malnutrition.

Has anything been done to correct the malnutrition?  Has your daughter been tested for vitamin and mineral deficiencies?  Is she taking any vitamin supplements now, besides the magnesium?  Since dairy has been removed from her diet, is she on calcium supplements?  

Magnesium needs to be balanced with zinc and calcium.  A deficiency in zinc can cause neuropathy, as can deficiencies of some of the eight B vitamins, like niacin and B12.  Vitamin D deficiency manifests as poor dental enamel, stunted growth, and constipation.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4199287/#!po=1.04167

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4208100/

I had "itchies" like you described your daughter has.  It was due to malnutrition.  Symptoms were ignored by my doctors who thought I was a hypochondriac.  I became severely ill because I was not absorbing nutrients efficiently.  

Celiac Disease causes malabsorption which results in malnutrition.  Sometimes supplementation is necessary to correct deficiencies until one can heal enough to be able to absorb nutrients.

The importance of correcting nutritional deficiencies is often overlooked by the medical profession. Especially since your daughter has had severe diarrhea and vomiting, she should be checked for vitamin and mineral deficiencies, if she hasn't been checked already.  

Hope this helps.

Thank you for your feedback.  About two years ago, I researched everything I could find on healing the gut and put her on a daily coconut milk shake that included Soothing GI Combination by Integrative Therapeutics, L-Glutamine, probiotic powder, children's vitamin and mineral powder, and collagen.  I also made sure her diet included bone broth, coconut milk, coconut oil, flax seed, and chia seeds.  She made great improvements, and was finally able to control her bowels.  There was no more diarrhea, although we did have to give her half a dose of Miralax daily to prevent constipation.  We were finally able to get rid of that when we eliminated dairy and almonds a few months ago.   The calcium/magnesium has been enough to keep her regular.  

Since her endoscopy came back normal, I've scaled back to giving her gummy multivitamins, vitamin D, B-complex, cod liver oil capsules, folate, L-Glutamine, collagen, liquid calcium/magnesium, and occasional probiotics.  I haven't given her zinc supplements, but it's included in the multivitamin.  I didn't want to give her too much since she gets constipated so easily. 

Her CBC and Metabolic Panel came back normal, but she hasn't been tested specifically for vitamin and mineral deficiencies, that I'm aware of.  

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3 hours ago, cyclinglady said:

I suggested testing her now for dietary compliance.   No one should ever do a gluten challenge without being under a doctor's care and preferably a gastroenterologist.  It can be dangerous!  

Tessa is right.  You have to be able to do your own research and make good safe decisions.  It is obvious that you are not a celiac expert.   You are not a doctor.  The lab expects you to be knowledgeable.    Please, please, consult with a medical doctor.  

Thank you, cyclinglady.   I definitely would not order a test like this without the supervision of a doctor.  I've been hesitant to do it at all, since I don't want to put her through a gluten challenge, but neither do I want her to have a false negative.   This would be a question for the gastroenterologist.  

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3 hours ago, tessa25 said:

The prep doesn't discuss challenges. The challenge duration would typically be decided by your doctor. If you're testing to see if she has celiac the recommendation by the celiac experts is at least one slice of bread per day for 12 weeks. If you're testing for compliance with the gluten free diet or testing to see if numbers have gone down because of a gluten free diet then there is no challenge. My testing is to verify that my numbers are still heading down to normal levels.

When ordering your own blood tests you are expected to do your own research.

Thank you, Tessa. I definitely would not order a test like this without the supervision of a doctor.  I've been hesitant to do it at all, since I don't want to put her through a gluten challenge, but neither do I want her to have a false negative.   This would be a question for the gastroenterologist.  

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16 minutes ago, Oneloved said:

Thank you for your feedback.  About two years ago, I researched everything I could find on healing the gut and put her on a daily coconut milk shake that included Soothing GI Combination by Integrative Therapeutics, L-Glutamine, probiotic powder, children's vitamin and mineral powder, and collagen.  I also made sure her diet included bone broth, coconut milk, coconut oil, flax seed, and chia seeds.  She made great improvements, and was finally able to control her bowels.  There was no more diarrhea, although we did have to give her half a dose of Miralax daily to prevent constipation.  We were finally able to get rid of that when we eliminated dairy and almonds a few months ago.   The calcium/magnesium has been enough to keep her regular.  

Since her endoscopy came back normal, I've scaled back to giving her gummy multivitamins, vitamin D, B-complex, cod liver oil capsules, folate, L-Glutamine, collagen, liquid calcium/magnesium, and occasional probiotics.  I haven't given her zinc supplements, but it's included in the multivitamin.  I didn't want to give her too much since she gets constipated so easily. 

Her CBC and Metabolic Panel came back normal, but she hasn't been tested specifically for vitamin and mineral deficiencies, that I'm aware of.  

Wow! Sounds like you are on the ball!  

Just like Cycling Lady suggested getting antibody testing now and a few months down the road so you can follow improvements, perhaps it would be worthwhile to do the same for deficiencies.  

Sometimes supplementing one vitamin can mask a deficiency in another vitamin.  For example, supplementing B12 may mask a folate deficiency and vice versa.  So before testing for deficiencies, stop all supplements for two or three weeks.  Consult your doctor.  

Some forms of vitamins or minerals are more beneficial than others.  Methylcobalamin and methylfolate are forms of B12 and Folate that are more bioavailable to people with the Mthfr gene that often occurs with Celiac genes.  

Some Celiacs low in the mineral molybdenum develop a hypersensitivity to Sulfur compounds which can cause digestive problems.  I had to change my magnesium and zinc supplements because they contained magnesium sulfate and zinc sulfate.  Chelated zinc and chelated magnesium are easier for the body to absorb.  Sometimes Sulfites are used as preservatives in foods or to prevent discoloration (in some coconut milk). 

Does your daughter keep a food journal? It's a wonderful resource to help spot problematic foods.  Some Celiacs can't tolerate nightshades and high lectin foods (beans).  Some find a low histamine diet beneficial.  

I do hope this helps you find answers for your daughter.  

 

 

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11 hours ago, Oneloved said:

There was only one endoscopy done, when they were trying to figure out why she was still having constipation issues after years of being gluten-free.  

Been sorta silently watching this topic so I would not jump on it, I had issues with the needle prickly, itchy, sometimes fire like skin crawling way before my celiac dia. It seemed to be made worse in the mornings and nights, after working or strenuous activity, after being in the sunlight, or in a source of direct heat. Best description crawling needle like itching that moved in waves acctoss my forearms, shoulder blades, chest, and to a lesser extent my legs sometimes getting to feel like hot tiny needles til it drove me to jump in the shower. IT was magnesium and it seems you are already supplementing on this. Even after healing I STILL have to take 2-4 times the recommended dose of magnesium or I become constipated. I also drink 12-16oz glass of tea, coffee or a warm beverage every 1-2 hours throughout the day, >.> and I consume a ungodly amount of fiber (50-100g) a day in the form of nuts, seeds, etc.  NOTE you should rotate your fiber sources like nuts and seeds removing one completely from the diet for 1-2 weeks at a time to prevent a intolerance from building up, also better for you body in various ways. Higher fats help I like walnuts, macadamia nuts when I can afford them, Most of the times I stick to coconut, cocoa, almonds for fats. And pumpkin (whole seed shell and all), Hemp (whole seed shell and all), ground flax, and a bit of chia (chia has some odd issues with my gut) for fibrous seeds (Hemp and pumpkin whole seed average about 10g of fiber for 28g of seeds)

On my magnesium I take Natural Vitality Calm and Doctors best on rotation. The Calm is a magnesium citrate which acts like a laxative, hence why I tend to do the mixed dose and rotate as I need it taking it 2-3 times a day.  Yeah I stop taking it and within 48 hours I become backed up. And my constipation can last a week after a gluten exposure or removing the mag supplement (I ran out once and learned I am dependent on it after the C and the fire needles came back after 4 days. Not let that happen in a year since then)

Other thoughts for the skin crawls for Immediate effects is a warm epsom salt soak, hurts like hell if your having a magnesium deficiency attack of the crawling itchy skin but after 30 mins feels wonderful. I recall it getting so bad I would just turn on cold water and step in the shower to stop it and get relieve

As others have mentioned B vitamins I was going to say for mine and other nutrients I get sublingual version from Liquid Health, the Stress & Energy and Neurological Support are great and I use it 3 tims a day half dose each, you just add it to a drink and no pills. I think they make a children multi, daily multi, and various other formulas to suite your needs.

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16 hours ago, squirmingitch said:

Something else that struck me was you said her itching ramps up at night.

Itching often increases at night due to the reduced quantity of cortisol excreted. This is true for people with eczema as well.

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"supplementing B12 may mask a folate deficiency and vice versa."

According to medscape,

Nutritionists have expressed concerns that folic acid fortification masks B12 deficiency, and a 2007 study demonstrated cognitive impairment in patients with high folate status in the presence of low B12. These patients were anemic without macrocytosis.[10] The authors suggest that excess folic acid precipitates both hematologic and neuropsychiatric manifestations of B12 deficiency. Interestingly, folic acid conferred cognitive protection in the presence of normal B12 levels. The point here is that folic acid supplementation in the presence of B12 deficiency may actually aggravate neurological symptoms.

http://www.medscape.com/viewarticle/726357_6

 

 

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OMG please stop, while well intentioned people are trying to help, none of this will.. Your daughter has parasites, the itching & crawling sensation is very real & internal. I don't know if coffee enemas are safe for a child, but would provide immediate relief. Least for a day or so. You'll have to research & work out a parasite be gone program..wish I could help with this one , but still trying to work this one out myself..Edgar Cayce said it's a good idea for everyone to do a 3 day apple cleanse every year for this very issue.. maybe try that & see if she doesn't feel better..I wish you the best of luck. 

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34 minutes ago, Juan said:

OMG please stop, while well intentioned people are trying to help, none of this will.. Your daughter has parasites, the itching & crawling sensation is very real & internal. I don't know if coffee enemas are safe for a child, but would provide immediate relief. Least for a day or so. You'll have to research & work out a parasite be gone program..wish I could help with this one , but still trying to work this one out myself..Edgar Cayce said it's a good idea for everyone to do a 3 day apple cleanse every year for this very issue.. maybe try that & see if she doesn't feel better..I wish you the best of luck. 

Coffee enemas?  Not safe or necessary.  If you really have parasites in your skin, how would an enema even help?  

 

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1 hour ago, Juan said:

OMG please stop, while well intentioned people are trying to help, none of this will.. Your daughter has parasites, the itching & crawling sensation is very real & internal. I don't know if coffee enemas are safe for a child, but would provide immediate relief. Least for a day or so. You'll have to research & work out a parasite be gone program..wish I could help with this one , but still trying to work this one out myself..Edgar Cayce said it's a good idea for everyone to do a 3 day apple cleanse every year for this very issue.. maybe try that & see if she doesn't feel better..I wish you the best of luck. 

Edgar Cayce was a "psychic & medical clairvoyant", a christian mystic. Ummmm, okay. Not exactly someone whom I would rely on for great medical or any other advice but you be the judge. Read about him here:

https://en.wikipedia.org/wiki/Edgar_Cayce

 

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2 hours ago, Juan said:

OMG please stop, while well intentioned people are trying to help, none of this will.. Your daughter has parasites, the itching & crawling sensation is very real & internal. I don't know if coffee enemas are safe for a child, but would provide immediate relief. Least for a day or so. You'll have to research & work out a parasite be gone program..wish I could help with this one , but still trying to work this one out myself..Edgar Cayce said it's a good idea for everyone to do a 3 day apple cleanse every year for this very issue.. maybe try that & see if she doesn't feel better..I wish you the best of luck. 

Hi Juan and welcome :)  Please don't take this the wrong way. I know you're also seeking to help but the others responding here have been careful to offer suggestions but not conclusions. That may be an approach you'd also like to consider. Whether the child has parasites or not it's clear that diagnosis via internet forum post is not without its risks. Also one of the members here has previously detailed negative consequences of repeated coffee enemas over a number of years. It's something I'd be very wary about suggesting for a young child.

Personally I think CyclingLady's  hit the nail on the head. A definitive diagnosis or exclusion of celiac sounds like a good place to start. A challenge may not be pleasant, but weighed up against a lifetime of potential uncertainty it may be a price worth paying.

Best of luck to you whatever course you decide upon!

 

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I just read that sometimes Candida grows long roots which stab through the intestines and gluten and anything can go right through the intestinal wall and into the blood stream where they get reinfected over and over.  Doing a candida cleanse sure wouldnt hurt anything.

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6 hours ago, Aluviel said:

I just read that sometimes Candida grows long roots which stab through the intestines and gluten and anything can go right through the intestinal wall and into the blood stream where they get reinfected over and over.  Doing a candida cleanse sure wouldnt hurt anything.

I would love to see a .gov or .org link about the candida roots (basically a noncommercial site).

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7 hours ago, Aluviel said:

I just read that sometimes Candida grows long roots which stab through the intestines and gluten and anything can go right through the intestinal wall and into the blood stream where they get reinfected over and over.  Doing a candida cleanse sure wouldnt hurt anything.

 

20 minutes ago, plumbago said:

I would love to see a .gov or .org link about the candida roots (basically a noncommercial site).

I don't think there is one!  It would be very scary if that were true and a lot of people would die or require surgery from   peritonitis/sepsis.

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7 hours ago, Aluviel said:

I just read that sometimes Candida grows long roots which stab through the intestines and gluten and anything can go right through the intestinal wall and into the blood stream where they get reinfected over and over.  Doing a candida cleanse sure wouldnt hurt anything.

I think this is someones exaggeration on how a Candida out break can make your body react to all kinds of foods in bad ways, and things your were sensitive to you become HYPER sensitive to. BUT the real reason for this is 1. Candida feeds on many sugars, starches, and various kinds of foods most people use as a staple and eating them causing the bacteria to go crazy causing you all kinds of gastric discomfort and immune reactions. 2. Your immune system is on the defensive with the candida having a riot in your intestines, so it is going to be a bit more aggressive responsive to things it would already react to. Like if you reacted to gluten your immune system is going to be like a overly aggressive pissed off pit bull when it sees it while trying to deal with the current issues at hand so stuff seems MUCH worse.

 

BACK to the subject at hand for this topic....ANYONE else share my opinion about the OP problems being more then likely a magnesium deficiency and nutrient issues with nutrients that would normally synergistic work together with nerve functions compounded by damaged intestines and celiac?

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