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Posts posted by Oneloved

  1. UPDATE:

    I decided to try eliminating nitrates in August 2017 after advice from a friend.  Within days my daughter was no longer complaining of constantly itching all over.  

    Despite being off nitrates, her itching symptoms returned two months later.  I began to suspect that the daily ½ dose of Miralax every evening was to blame.  She has been on Miralax for nearly 2 years per the orders of her gastroenterologist, with no sign of her body improving enough to eliminate without it.  

    In March, we decided to discontinue cyproheptadine, which her gastroenterologist had prescribed to increase her appetite.  Since it constipation is one of its side effects, it seemed to be aggravating the cycle of constipation, suppressed appetite, and inability to get off the Miralax.  

    With the cyproheptadine gone, we decided to discontinue Miralax and switch to a daily dose of magnesium instead.  It has been a difficult transition, with my daughter often not pooping for up to 4 days, only to finally eliminate by diarrhea.  However, the itching and “skin crawling” symptoms are completely gone. 

    In May I cooked a meal with nitrates to test whether they were safe to reintroduce, and she began complaining of itching within hours, so that will stay out of her diet.  

    One week later, I decided to test her reaction to Miralax and gave her a ½ dose in the afternoon.  She began complaining of itching by bedtime.  We have deduced that Miralax has likely been the primary cause of her itching symptoms for over a year, and will not put her back on it.  

    The challenge has been to find the correct dose of daily magnesium to keep her regular without diarrhea, but with our naturopath's help, it appears we are finally on the right track to a solution. 

    We also decided to have her genetically tested for celiac, and the results came back negative.  The specialist I spoke to said that it doesn't necessarily rule out celiac, however, because geneticists are constantly making new discoveries for genetic markers that were not previously known.  She recommends retesting several years down the road. 

    Thank you all for your help and advice.  

  2. 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.  

  3. 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.  

  4. 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.



    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.  

  5. 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?  

  6. 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.  

  7. 11 minutes ago, squirmingitch said:

    As to dh without any blisters or bumps..... I don't think docs would call it dh but I know for a fact, at least with me, that is how it began. Call it pre-dh, call it anything you want but it happened with me. When I did begin getting bumps & later, blisters, they began in those same areas where I had the intense "invisible" itchies.

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

  8. 29 minutes ago, cyclinglady said:

    Your child is young.  I would seriously ask you to consider a gluten challenge under the care of a Ped GI who is celiac savvy.  With an endoscopy, it only requires a two week challenge.    You are always going to run into negative feedback without a formal diagnosis.  Fine for adults (my hubby has been gluten-free for 16 years without a diagnosis), but he does not require accommodations for his diet. 

    Can you not order a celiac antibodies test online?  Can't that NP order it?  

    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.  

  9. 3 hours ago, Mia17 said:

     I have the exact same thing happen to me when I'm very tired or stressed. It's the nerves overreacting.   There is no physical sign. I recommend you see a neurologist as soon as you can because these are the symptoms of some more serious issues.    You have done all you can on the diet front and more.  You are right for a dermatology condition there needs to be a physical manifestation. This is more than skin deep.   Nerves give off powerful signals, why your child is in so much discomfort.   I experienced it first hand, it's an awful sensation.   Nerves seem to act up at night more for some reason probably because if there is a condition they are more reactive when the person is tired.   Good luck.

    Ugh, that's what I'm afraid of.  If this is neurological, I don't want permanent nerve damage to be done while the doctors keep grasping at straws.  But I have to tread lightly since they've already labeled it "idiosyncratic."   I want them to work with us, not dismiss me as some sort of over-reactive mama who reads too much Web M.D.   

  10. 34 minutes ago, squirmingitch said:

    I gave you the link for the Fasano diet in my earlier post.

    Something else that struck me was you said her itching ramps up at night. Almost all of us with dh will tell you it ramps up at night.

    Yes, I saw that link, thank you.  The "Products allowed/disallowed" chart is helpful.  I was just hoping to find something that explained it in more laymen's terms, LOL.   

    I had ruled out DH because there were no blisters or bumps, but it's interesting to hear that it can manifest without external signs.   

  11. 31 minutes ago, Victoria1234 said:

    At some point you may want to get your kids formally diagnosed so they can get a 504 plan for school, and once they get old enough to get food out with friends they may start to rebel without it. They'll need it for college too and if they have to go overnite to the hospital.

    thoughts on the enterolabs testing is a. mixed bag  here and on the internet. What symptoms were your children having before they went gluten-free? What are their symptoms when they get an accidental glutening?

    I got itching where my dh had been when I had the smallest bit of cc my first year or two. No rash. 

    call the dermatologist office every day asking if their is a cancellation. Squeaky wheel and all that. It must be miserable dealing with this day in and day out for her!

    Yes, I need to get a formal diagnosis, especially for my 7-year-old, but I don't want to have to feed her gluten for the blood test.   She gets horribly constipated and it's difficult to keep her regular as it is.   I don't think our insurance will cover genetic testing , either.   An endoscopy showed that we healed her gut successfully, so a biopsy would be pointless (thank God).   Thankfully we homeschool so we don't need 504 plan right now. 

    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.  

    I agree I need to keep calling the dermatologist.  They told me it wasn't "emergent" so she had to wait for a regular appointment.  As if itching non-stop for five months is no big deal!  Soooo frustrating!  


  12. 6 hours ago, cyclinglady said:

    I would suggest the Fasano diet (mostly Whole Foods) for a few weeks.  She might be reacting to low levels of gluten in even gluten free products.  It might be worth running a celiac antibodies panel even though your household is gluten free.  I get itchiness without a rash if exposed to gluten.  

    The celiac antibodies panel is the blood test, correct?  I'm worried that if it comes back negative because there's not enough gluten in her system, it will go into her medical record that she tested negative for celiac, and that will make it much more difficult for me to get her the help she needs.  

    Unfortunately, I'm dealing with a lot of doctors who are pretty clueless about gluten issues.  I had one pediatrician tell me that if the allergy test for wheat was negative, it was OK for her to eat it.  She thought the histamine test was "more accurate." Unreal!   Celiac and gluten intolerance are NOT food allergies!   I also had a gastroenterologist totally dismiss the IGg stool test, tell me that there was no such thing as "leaky gut," and that "tummy aches are normal for kids."  This was when my 5-year-old was still in diapers because she couldn't control her bowels, had serious growth delays, and was suffering from Cyclic Vomiting Syndrome.  I feel sorry for any celiac or gluten intolerant kids who come to him looking for answers.  

    Where can I find more info about the Fasano diet?  I'm not familiar with that.  Right now we're going nitrate-free, trying to do organic for "the dirty dozen," and washing all produce in vinegar, but so far no difference. 

  13. 1 hour ago, Victoria1234 said:

    I actually meant the elimination diet, not more testing. This is where you eat foods that are very unlikely to be causing a reaction, such as just chicken and rice, for a period of time. Then you reintroduce a single food group such as dairy for a day and wait a few days to see if there is any reaction, feel free to google elimination diet for a much better description than mine. This is what I had to do to find out I was intolerant to dairy for about a year. It did not show up on an allergy test. Many people here have to do this as they are sensitive to many other foods.

    Thank you for the suggestion.  The food sensitivity test we did is different from an allergy test.  It's an IGg blood panel, not a histamine panel, so it looks for a delayed immune response, not an allergic one.  My naturopath did it for us since our doctor poo-pooed it.  

  14. 9 minutes ago, squirmingitch said:

    Another thought

    Have you considered taking her to a neurologist? itching can be coming from nerves & I mean the actual kind of nerves not the mental kind of nerves.

    Honestly, this is where my thinking is headed.  When the allergist said it didn't appear to be a histamine reaction, I asked the pediatrician if it might be neurological, but she wants us to try the dermatologist first.   I don't know why, when there are no outward rashes or symptoms, but that was her recommendation.  Unfortunately, it'll be a month before dermatology can see her, and who knows when or if they'll agree to a neurological assessment after that?  

    They've already labeled it "idiosyncratic," which worries me.   Some doctors, when presented with a case they can't immediately explain, start suspecting the parent or child of being hypochondriac, of it being all in our heads, or faked, or worse.  

    I'm doing whatever they recommend at because I want to rule out every possibility, but I suspect that they're just as confused as I am at this point, aimlessly searching for anything that might stick.  None of them are very familiar with celiac or gluten intolerance.   

  15. 7 minutes ago, squirmingitch said:

    I was thinking along the lines of a reaction to the poison used by the pest control people. Not a allergy to what they're using but a reaction to the poison itself OR the flea treatments used on the dog. This is where my mind was moving when I asked those questions. Just trying to brainstorm with you. 

    Another thought...... what do you feed the dog? Is IT gluten free? Dogs lick, they lick themselves & they give their people kisses (which we LOVE getting but.....if they aren't gluten free kisses & they land on lips.......).

    That's a good question.  I hadn't even thought about the dog food.   I'll have to double check that.  We did have the dog staying with my parents for two months (we're in the process of getting ready to sell), and the itching didn't stop while he was gone.  Hmm...

    As for the pest control poison, it's all been outdoors, and the last treatment was 8 months ago (we can't afford quarterly service).  Since the itching started five months ago, it seems odd that there would be that long of a delay.  

  16. 2 hours ago, squirmingitch said:

    Is she celiac? If so, are you positive she's not getting any cross contamination from ANYWHERE? Do you have any pets? Does she get exposed to pets at friends/relatives homes? Do you have a pest control service?

    She's never had a formal celiac diagnosis, but all four of my girls have tested positive for gluten intolerance with the stool test, and have been gluten-free since they were toddlers.  She's my third child, and by far the most sensitive.   She's growth delayed and has had ongoing digestive issues.  We can't afford genetic testing and I'm not willing to put her through the misery of feeding her gluten for the blood test, or the invasive biopsy (which probably would show nothing anyway, since an endoscopy showed that we had succeeded in healing her gut).  

    I have purged my kitchen countless time, combing over every label and banning all gluten.  My husband is the only one who eats wheat in our house and he has a separate cupboard and toaster out in the garage.  When she was five, we discovered that she was being glutened from the raw chicken I was buying, which had been injected with broth.  That discovery enabled her to finally gain enough control of her bowels to get out of diapers.   

    Since eliminating dairy and almonds a few months ago, we've finally been able to forgo the Miralax and get her regular just with a daily dose of calcium/magnesium.  But this itching sensation is a new thing, and we just can't seem to nail down the cause.  We homeschool and we always bring our own gluten-free/df food wherever we go, so I can't figure out where she might be getting gluten, if that's the cause.  

    We've had a dog for the past four years, but it's never been a problem before.  We do use Terminex, and flea treatments for the dog.  Since there are no bug bite marks or rashes, it doesn't appear to be fleas.   Her blood allergy testing came back normal, and none of the histamines our allergist recommended have worked, so he says it doesn't believe it's an allergy/histamine reaction. 

  17. 4 hours ago, Victoria1234 said:

    Have you tried an elimination diet to check for other food allergies? A lot of people on here can't have milk, soy, eggs, etc. and it's fairly easy to do the elimination diet to test at home.

    I did have her get a second round of food sensitivity testing and it came back positive for dairy (casein) and almonds (we had been using almond milk).   Eliminating those has helped relieve her constipation, but has done nothing to alleviate the itching.  

  18. My 7-year-old has been complaining of constant itchiness and a skin crawling sensation for the past five months, but has no external rash or symptoms.   It seems to get worse at night, although that may be because it's more difficult to distract herself at bedtime.   We've tried switching shampoos and detergents, tepid baking soda baths followed by gluten-free lotion, re-reading the labels on anything that comes in contact with her skin, having her re-tested for more food sensitivities, and even checking the house for mold and cleaning all the air ducts.   Nothing has helped. Her pediatrician referred us to an allergist who had us try several different histamine blockers, but not even Benadryl brings relief, so it doesn't appear to be a histamine issue.  Blood tests show that her kidneys, liver and thyroid are all functioning normally.   Right now I'm trying having her go nitrate-free since that isn't included in food sensitivity tests, but so far no improvement.   Now they want to refer her to a dermatologist, but the appointment is a month away and she is MISERABLE.  I have no idea how to help her.  

  19. My daughter is 7 and has been complaining of itchy skin, especially at night, for several months.   Occasionally she says it feels like something is crawling on her.  She is extremely sensitive to cross contamination, but up until now her symptoms have been mostly IBS.  

    We've tried everything we can think of.   We rewashed all of her clothes and sheets in dye-free, fragrance free detergent.  We switched shampoos and conditioners.  We cleaned the air ducts and checked for mold.   We've slathered her with coconut oil in case of dry skin.   

    We had her checked for more food intolerances, and her IGg test came back positive for dairy and almonds, so we've eliminated those in addition to gluten and oats, but it hasn't helped the itching.  

    We're giving her calcium & magnesium at night, along with some Benadryl to help relieve the symptoms, but it only seems to make her drowsy, not truly give relief.   

    Her pediatrician ordered blood tests to check her liver, kidneys, and thyroid, but it all came back normal, apart from a slightly low white blood cell count.   We're supplementing her with folate and gluten-free food-based iron because she frequently complains of fatigue.   A blood panel on common food and environmental allergens (IGe) came up with no allergies.  

    This is so frustrating.   Every night she cries that she's itchy and can't get comfortable, and we're no closer to finding answers and getting her relief than we were at the beginning.   

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