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Guest 6kmom

By Guest 6kmom
in Parents, Friends and Loved Ones of Celiacs

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Guest 6kmom
Guest 6kmom
Posted

We are suspecting that my 9 year old has celiac or a very severe gluten intolerance. He has always had headaches, muscle cramps, very sensitive stomach and very irratable (no wonder). He had a 4 day spell where he could keep nothing down. After going to the doctor and having some normal tests done I decided to pull him off of gluten. He was wonderful for 10 days. He kept everything down and said he felt better than he has ever felt. When I talked to the doctor about getting testing done she said put him back on gluten and come back in a month. Within hours of ingesting the gluten, he was sick again. After several days of not keeping anything down I talked to the pediatric GI. They said get the blood work done right away. He has been back off of gluten since and still hasen't keep anything down. We are now at 1 week of throwing almost everything up.

Does anyone have any hints for me? Help!

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Jestgar Rising Star
Jestgar
Posted

How scary for you! What is he eating? Have you tried plain white rice and applesauce?

AlwaysBrightMorningStar Newbie
AlwaysBrightMorningStar
Posted

Just to let you know right now I hate typing so if I get sloppy....My daughter who is 8 was just diagnosed with celiac disease february 10th. Before that she had throwing up bouts that could last for days. She would just throw up bile for hours and hours. went to the hospital a couple of times for dehydration too. Dont know if this would help your son or if its even the same circumstances really but i gave my daughter a drug that they use for chemo patients. Its for nausea and vomiting and it would stop it instantly for her. If you havent tried that it might be worth a try. Its called Ondansetron and i do believe its generic. I always got the kind that just gets held under the tongue and disolves that way you dont have to worry about trying to take in water if its a pill( my daughter would definately not have been able to do that) Well I hope that this will be of some help for you,if not now, maybe in the future because im praying that your son is already on the mend.:)

Chelsea-A Rookie
Chelsea-A
Posted

We are suspecting that my 9 year old has celiac or a very severe gluten intolerance. He has always had headaches, muscle cramps, very sensitive stomach and very irratable (no wonder). He had a 4 day spell where he could keep nothing down. After going to the doctor and having some normal tests done I decided to pull him off of gluten. He was wonderful for 10 days. He kept everything down and said he felt better than he has ever felt. When I talked to the doctor about getting testing done she said put him back on gluten and come back in a month. Within hours of ingesting the gluten, he was sick again. After several days of not keeping anything down I talked to the pediatric GI. They said get the blood work done right away. He has been back off of gluten since and still hasen't keep anything down. We are now at 1 week of throwing almost everything up.

Does anyone have any hints for me? Help!

What did the blood work show?

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    • knitty kitty
      Severe severe mouth pain

      By knitty kitty · Posted

      @Charlie1946, There are many vitamin deficiencies associated with PCOS and Celiac disease and mental health issues.  The malabsorption of nutrients caused by Celiac can exacerbate PCOS and mental health issues. Vitamin B 3 Niacin (the kind that causes flushing) improves sebaceous hyperplasia and PCOS. (300 mg/day) Vitamin B 1 Thiamine improves dysphagia, and with Omega Threes, Sjogren's, and PCOS.     (300 mg/day) The other B vitamins are needed as well because they all work together like an orchestra.   The fat soluble vitamins A, D, E, and K, are needed as well.  Low Vitamin D is common in both PCOS and Celiac and depression.   Deficiencies in Niacin Thiamine, Cobalamine B12, Folate B 9, Vitamin C, and Vitamin D can cause mental health issues.   I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants.  My mental health issues didn't get better until my vitamin deficiencies were corrected and a gluten free keto/paleo diet adopted.   Though blood tests are not really accurate, you may want to get tested for deficiencies before supplementing, otherwise you'll be measuring the vitamins you've taken and blood tests will show blood levels that are too high. Yes, Thiamine TTFD and the other vitamins are available over-the-counter.  A B Complex with additional Thiamine TTFD and Niacin made a big difference to my health.  I follow a paleo diet, and make sure I get Omega Threes.  I took high dose Vitamin D to correct my deficiency there.   I've run through the mental health gamut if you would like to talk about your issues.  You can personal message us if you would be more comfortable.   Interesting Reading: Nutritional and herbal interventions for polycystic ovary syndrome (PCOS): a comprehensive review of dietary approaches, macronutrient impact, and herbal medicine in management https://pmc.ncbi.nlm.nih.gov/articles/PMC12049039/
    • cristiana
      Severe severe mouth pain

      By cristiana · Posted

      Hi @Charlie1946 I am so sorry to hear you are suffering with this problem.   Just a few other thoughts.  I had debilitating anxiety prior to my diagnosis.  I was never admitted to a hospital but thankfully had a lot of support from friends and family, and found a couple of publications contained really helpful advice:  for depression, The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi, and for debilitating anxiety, At Last A Life by Paul David.  Both can be ordered online, there is also a website for the latter.  If you are deficient in or have low iron or B12 this can cause or worsen mental health issues.  I am sure my own issues were caused by long-term deficiencies.   If you can get your blood tested, it would be useful.  In the case of iron, make sure you only supplement if you have a deficiency, and levels can be monitored, as too much iron can be dangerous. If you have burning mouth issues, very bad TMJ or neuralgia,  I understand the pain can be managed by the use of a certain class of medication like amitriptyline, which is also used to treat depression.  But there again, it is possible with the correct diet and supplementation these issues might improve? I do hope that you find relief soon. Cristiana
    • trents
      Severe severe mouth pain

      By trents · Posted

      @Charlie1946, as an alternative to milk-based protein shakes, let me suggest whey protein. Whey and casein are the two main proteins found in milk but whey doesn't cause issues like casein can for celiacs. Concerning your question about celiac safe mental health facilities, unfortunately, healthcare facilities in general do not have good reputations for being celiac safe. Most celiacs find that they need to depend on family members to advocate for them diligently or bring in food from the outside. Training of staff is inconsistent and there is the issue of turnover and also cross contamination.
    • Charlie1946
      Severe severe mouth pain

      By Charlie1946 · Posted

      @knitty kitty are you kidding?  I had no idea about the casein!! No one ever mentioned that to me at all!! I basically live off that milk! I have also wondered if I have Sjorgen's , but I haven't been to the doctor yet. Can you get the TTFD over the counter? I do have dysphasia and I have lysine I just haven't been good about taking it. I am so glad I found this group and all of you with all this helpful information!! I thought I was going crazy!!  I have sebaceous hyperplasia too- is that related to Celiac?  OH , and I wanted to ask if there is a site where I could find information on mental health issues , with celiac safe facilities??
    • Charlie1946
      Severe severe mouth pain

      By Charlie1946 · Posted

      @trents, Hi, thank you for the reply, I used to be pretty good at taking my vitamins and supplements, because I also have PCOS, I have Barrett's esophagus, it's just too expensive to have it stretched all the time, and I also get kinda panicked when trying to swallow pills because of getting choked a lot before.  I think maybe the thrush made it worse, I just can't figure out why I can't get it to go away 
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