Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

"Super Sensitive" Celiacs.....

jerseyangel

By jerseyangel
in Super Sensitive People

Recommended Posts

weluvgators Explorer
weluvgators
Posted
last I checked only the rice crust pizzas and the gluten-free mac and cheese were made in a dedicated facility. I have not tried the mac and cheese but LOVE throwing a bunch of stuff (veggies, meat) on them! One of my favorites!

Everyone is definitely on a different path! But what you just described sounds like an ALLERGIC reaction- not a gluten one- the hives, the headaches, the red skin. This might explain WHY despite the guests following your protocol your girls got sick. They may be allergic to something and you should consider getting them tested. Eggs are one of the top 8 allergens and I would HATE to see you blame it on gluten only for one of them to later have a serious allergic reaction.

I'm wondering if you have tried the elimination diet to be sure?

Yes, I agree it does sound like an allergic reaction, and that is my current thought for what we witnessed then and there. And I mentioned the eggs because I do plan to test them more thoroughly. We are currently gluten and dairy free with avoidance of soy and corn. There are other foods that individuals in our family eliminate or avoid for their specific needs. We have done several elimination diets on this journey, and I expect that we will continue to do more. Almond is one that I am currently trying to test for the family. It is very confusing to review details of these types of events, and I struggle to write them down for reference sometimes.

My girls have eaten eggs in the past without problems - same source too. While a possibility, I have already gone in many circles to often route back around to a possibility that also makes sense. I am somewhat biased based on our personal test results from Enterolab, as our gluten numbers were much more elevated than egg. We were generally around the Normal range for egg, but elevated highly for gluten. If you can direct me to a place that has information to discuss antibody levels and their meaning, I would appreciate it. I am still trying to understand other details of testing stuff too. It is rather difficult to find time to do so much reading and exploring. I sure am glad that I enjoy that part!

Seriously, their touching a keyboard and then eating with their hands - hey, they are kids, and it was pear chunks and stuff - great finger food - it just seems silly for me not to consider that the glutened keyboard is a possible explanation for their reaction. But who knows?! I am racking my brain for all possible explanations!! And, I have simply never seen it before. I may consider blood testing just to check if they do register any antibodies like that, and I take their reactions seriously. My DD2 did exhibit glutening symptoms that night - fever with restless sleep and belly ache. It is hard to understand all the things that are playing into it, but I am trying. Do you hold the eggs up with more suspicion than the gluten?

Of course, coming down with something may also be at play here - we are talking about the workings of a dynamic and variable immune system that is in development. And, gluten exposure doesn't usually help them fight things off. There are many variables to it all!

And, well, it was a reminder for me to ALWAYS make sure that hands are washed before we eat!! A rule well worth having in our house. It improves my sanity when I don't have to wonder if it was THAT! :lol: Oh, and a great reminder to get the portable hand wash station ready in the car - we are getting out to parks and for travel more where we need to wash our hands when we want to eat a bite.

Keila

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


  • Replies 477
  • Created
  • Last Reply
dilettantesteph Collaborator
dilettantesteph
Posted

Re: washing gluten.

I did an experiment. I had gluten containing amaranth seeds. I washed them with rubbing alcohol, I used rubbing alcohol because gluten is soluble in strong alcohol and that was the closest thing I had. Then I washed with soap and water. I tested before and after with the test strips. Of course it is impossible to be sure that the sample is contaminated in a uniform way. The washing procedure I used decreased the amount of gluten in the sample, but not by much. This lead me to believe that washing out food isn't going to achieve all that much in the way of washing off gluten. I wouldn't count on it with the beans, Keila, sorry.

Lisa Mentor
Lisa
Posted
I wouldn't count on it with the beans, Keila, sorry.

I'm sorry, but I have to ask... do you consider BEANS to be unsafe for Celiacs to consume?

(Patti, my most sincere apology)

jerseyangel Proficient
jerseyangel
Posted
  • Author

Lisa, please don't apologize! You have as much a right as anyone to ask questions and state your opinion ;)

Jestgar Rising Star
Jestgar
Posted
Re: washing gluten.

I did an experiment. I had gluten containing amaranth seeds. I washed them with rubbing alcohol, I used rubbing alcohol because gluten is soluble in strong alcohol and that was the closest thing I had. Then I washed with soap and water. I tested before and after with the test strips. Of course it is impossible to be sure that the sample is contaminated in a uniform way. The washing procedure I used decreased the amount of gluten in the sample, but not by much. This lead me to believe that washing out food isn't going to achieve all that much in the way of washing off gluten. I wouldn't count on it with the beans, Keila, sorry.

or...

it was a false positive to begin with, and all you did with your manipulations was add water to your sample, which made the result look a little less dark on the strip...

Kaycee Collaborator
Kaycee
Posted

Back to spices. Here in NZ a lot of the spices I look at in the supermarket say, processed on a line that processes gluten etc, or may contain traces of gluten. I have even cooked a cake once, felt sick and thought I better check the ingredients, and the packet of cinnamon I had used said it contained gluten. So I agree spices can be an issue. But having said that, our labeling and food production is different to yours, but I'm quite sure most of our spices are imported from somewhere.

Cathy

Mike M Rookie
Mike M
Posted
I'm sorry, but I have to ask... do you consider BEANS to be unsafe for Celiacs to consume?

(Patti, my most sincere apology)

Of course you know that beans in themselves are safe. If you are extra sensitive (what this thread was made for no?) there can be CC issues and gluten just does not wash off readily. The same equipment that harvests the beans in our area, also harvests the wheat. The winter wheat is taken off in early June around here and then the farmers "double crop" with beans. They just change the combine heads to do this at harvest time, using the same trucks and the same grain storage silos as the wheat. Mike

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

Farm much Mike? :huh:

If this is the case, you must not eat any harvested food.

Mike M Rookie
Mike M
Posted
Farm much Mike? :huh:

If this is the case, you must not eat any harvested food.

Not much LOL, (Farming that is) Mike

Lisa Mentor
Lisa
Posted
Not much LOL, (Farming that is) Mike

Didn't think so. ;)

Jestgar Rising Star
Jestgar
Posted

Sorry for hijacking angel..

I contacted the gluten strip company and they said:

I talked with the lab and if you follow the instructions that come with the EZ Gluten Kit you have the correct reading. You should not leave the strip longer than 10 minutes.

in response to these questions:

Is there a way to increase the sensitivity of the test strips? Could I add more sample to the extraction solution, or leave the sample on the strip for longer than 10 minutes?

Also, how can I tell if I've messed something up and the sample isn't positive, I just screwed up the test somehow?

My interpretation of this is: if you don't do it the way you're instructed, they don't guarantee the results.

Sailing Girl Apprentice
Sailing Girl
Posted
I'm wondering if you have tried the elimination diet to be sure?

Yes, I have. Methodically. And I've also eliminated and then challenged four or five of the most likely suspects (dairy, soy, corn, nightshades, nuts), in some cases a couple of times. Nothing. I do not react to any of these. But I am extremely, exquisitely sensitive to gluten.

Mtndog Collaborator
Mtndog
Posted
Yes, I have. Methodically. And I've also eliminated and then challenged four or five of the most likely suspects (dairy, soy, corn, nightshades, nuts), in some cases a couple of times. Nothing. I do not react to any of these. But I am extremely, exquisitely sensitive to gluten.

Ugh....don't you hate that? :(

oceangirl Collaborator
oceangirl
Posted

Hi- wow! Lots happening on this thread... I apologize ahead of time for not having time to read through this entire thread, but, am I to understand that McCormick spices are not dedicated and absolutely gluten-free? Sorry to make anyone repeat! Sounds like a zillion issues are being addressed here.

I suppose it could explain some mysterious glutenings for someone who makes almost everything from whole foods...

Thank you,

lisa

Jestgar Rising Star
Jestgar
Posted

I just did a quick search and did not find anyone who had reaction to McCormicks, and many people who said they used McCormick's spices with no problems.

A more in-depth search might give you more information, if you wanted to invest the time.

oceangirl Collaborator
oceangirl
Posted

Thanks, Jestgar.

lisa

rumbles Newbie
rumbles
Posted

I have had occasional reactions to McCormick's spices; because I'm extremely sensitive to cross contamination and blister so easily, I rarely use spices anymore.

dilettantesteph Collaborator
dilettantesteph
Posted

Me too.

oceangirl Collaborator
oceangirl
Posted

I am supremely sensitive to gluten. Pretty positive I don't react to Mccormick's. 4 Years in I am very aware of the difference between reactions to my various intolerances. Thanks for the info, though. I wonder if your skin reaction is to the specific spice- that would make sense, I think.

lisa

dilettantesteph Collaborator
dilettantesteph
Posted
I am supremely sensitive to gluten. Pretty positive I don't react to Mccormick's. 4 Years in I am very aware of the difference between reactions to my various intolerances. Thanks for the info, though. I wonder if your skin reaction is to the specific spice- that would make sense, I think.

lisa

I am so happy to hear that. I was worried about you.

weluvgators Explorer
weluvgators
Posted

Hi! I was hoping for some suggestions to help a super sensitive person after they have been exposed. I do not feel that I am the super sensitive one in our family, but that is because I live with an almost 4 year old that is just so incredibly sensitive to gluten. I try to be understanding, but it feels so hard sometimes. Do you have suggestions for helping her cope with the irritability, depression, belly aches and leg pains? Do any of you experience sinus and respiratory issues with gluten CC exposure? I feel so bad for her, but I also feel such a tremendous responsibility to demonstrate that this lifestyle is wonderful.

Thanks.

dilettantesteph Collaborator
dilettantesteph
Posted
Hi! I was hoping for some suggestions to help a super sensitive person after they have been exposed. I do not feel that I am the super sensitive one in our family, but that is because I live with an almost 4 year old that is just so incredibly sensitive to gluten. I try to be understanding, but it feels so hard sometimes. Do you have suggestions for helping her cope with the irritability, depression, belly aches and leg pains? Do any of you experience sinus and respiratory issues with gluten CC exposure? I feel so bad for her, but I also feel such a tremendous responsibility to demonstrate that this lifestyle is wonderful.

Thanks.

I have found probiotics like BioK very helpful for healing with my son and I. He hates it though, and would usually go through pain and just eat yoghurt, which is also good.

weluvgators Explorer
weluvgators
Posted

Has anyone experienced issues when interacting with other people that have trace gluten in their personal space? Examples I can think of are people with gluten eating pets (like dogs that are in close proximity to their owners) and people that use gluten containing personal products (like hair sprays).

Sailing Girl Apprentice
Sailing Girl
Posted

Two more products down for the super-sensitive:

-- Bionaturae tomato paste (ingredients: organic tomatoes). My daughter had a horrible gluten reaction after eating nearly an entire jar of this stuff (and no, she doesn't react to nightshades). I tested it and it was faint positive, so probably okay for non-super-sensitives.

-- Haagen Dazs raspberry sorbet (ingredients: water, raspberry puree, sugar, corn syrup, fruit pectin, lemon juice concentrate, may contain trace amounts of milk protein). I had a medium-grade CC reaction to this (and no, I don't react to corn or to dairy). I tested it and it was positive -- probably right around 20 ppm. I've suspected reactions to Haagen Dazs before, but this was the first time I've confirmed it.

Sigh. Looks like I'll be making my own tomato paste and sorbet this weekend.

dilettantesteph Collaborator
dilettantesteph
Posted

Sorry to hear about that. It is harder to see your child sick than to be sick yourself. At least we get to learn to be great cooks!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,874
    • Most Online (within 30 mins)
      7,748
    LeeD
    Newest Member
    LeeD
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      71.3k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      How long after being diagnosed with Celiac do you feel better?

      By trents · Posted

      Thanks for sharing, Karen. Certainly a needed reminder what we already knew (and I've posted many times on this forum) but sometimes forget, namely, autoimmune disorders tend to cluster. Where one is found, you can look for others to show up eventually. The thing that is unusual in your son's case is the onset of several of them at such a young age. My sister in law, who is in her early 60's has Crohn's and struggles with constipation so I don't think that is unusual with Crohn's. If nothing else, it's the outcome of not eating much because of the pain. Now that you know what is going on with your son and the Crohn's, we hope he is beginning to improve.
    • Nathan.
      How long after being diagnosed with Celiac do you feel better?

      By Nathan. · Posted

      Hi there. My son is turning 16 this month. He had an endoscopy and biopsy to confirm celiac. He went gluten-free and his pain never got any better. I think it got worse. Months went by. The pain started around 7th grade. He missed a lot of school in 8th grade, and a whole lot in 9th grade. He couldn't go to school in 10th grade. All along the gastroenterologist prescribed Hyoscyamine, didn't help at all. Cyproheptadine, no less pain. Peppermint oil, ginger, Miralax, Senna. Doc said he was constipated, but I couldn't get him to have Miralax daily. Eventually he went on Linzess and no senna or Miralax. Sorry this is long, there will be a point.  We gave his school not just a doctors not, but everything, and U of M makes a lot of notes. They still turned us in for Truancy.  I didn't get him enrolled in online school fast enough.  The school would not recommend an online school and i didn't know which one to choose.  Doc thought it was nerve pain and mental. He recommended the u of m my pain program.  Nathan did so good, 3 days a week supposed to be for 4 weeks.  Never missed, always on time.   After two weeks, they discharged him. Said it was not  benefitting him.  Pain went on. I had been asking if there were any other test they could do. Ultrasound, colonoscopy. Doc said we can do it, but I don't think we'll find anything.  Finally he had a colonoscopy and another endoscopy.  Guess what, they did find something. They found a ton of tiny ulcers everywhere, from the esophagus to his rectum. They think Crohn's. I understand they didn't check for that because he was more constipated, not much diarrhea. He is getting an MRI with contrast on Sunday. Also they want him to do a cal-protectin (give a poop sample). Then an appointment on the 16th to talk about treatment. Then the probation officer on the 17th. In the meantime he is taking Budesonide extended release.  $276.00 for 30 pills, and that's with insurance. Also he was diagnosed with hyperthyroidism, Graves disease a few months ago. If it is for sure Crohn's,  it will be three autoimmune diseases. If someone is gluten-free for a month or more, and the pain is no better, don't stop looking. I was beside myself. Did they think he was exaggerating, lying? I was considering taking him to a holistic doctor, who would probably recommend Peppermint oil and ginger.  He's such a good kid. Kind of an introvert. He was on the 9th grade soccer team. He would try to go to practice and kept having to stop, the pain was that bad. Every time he ate, it didn't matter what, gluten-free chicken tenders, mac and cheese, pizza, ice cream, all gluten-free, he would eat a normal amount but stop and say, I can't eat anymore, my stomach hurts.  If anyone reads all this, thank you. I had a gut feeling, no pun intended, that he had an additional problem. They found celiac and stopped looking. If you don't feel better, keep on your doctor to check further, keep looking.   Take care, Karen  
    • Scott Adams
      Recent blood test results check in - TTG- IGA

      By Scott Adams · Posted

      Most likely cross-contamination I believe.
    • cristiana
      How long after being diagnosed with Celiac do you feel better?

      By cristiana · Posted

      I think it takes different people different amounts of time, but in my own case I had pain,  bloating and loose stools for some time, exacerbated by a lactose intolerance, which eventually went.  I would say the really bad diarrhea got better quite quickly, but the bloating pain carried on for a few months, until I was told to give up lactose for a few weeks.  That helped enormously and once I realised milk and yoghurt was the cause, after a short break I went back to lactose very gradually and felt a lot better.  Now I can tolerate it well. From Coeliac UK "The enzyme lactase is found in the brush border of the small intestine. This is why people with coeliac disease can be deficient in lactase at diagnosis. Once established on a gluten free diet, the gut is able to heal and lactose digestion returns to normal. Lactose intolerance is therefore usually temporary." So if this helps your daughter, this doesn't mean you have to give up lactose forever, especially as dairy is such a good source of calcium for growing kids.   Bear in mind you should be able to reintroduce it. As for fatigue, this can be due to vitamin and mineral deficiencies,such as iron, vitamin D and B12.  Were these levels tested?  If not, I would suggest you get them done.  If your daughter is deficient in these, it is vital you address the deficiencies, and get the tests redone in a few months, particularly the iron, because too much can be dangerous.
    • knitty kitty
      Inhaler problem

      By knitty kitty · Posted

      Hello,   The medication in these inhalers can cause a thiamine deficiency if used by someone already low in thiamine.  We don't absorb sufficient amounts of vitamins and minerals due to the inflammation and damage done to our villi in Celiac Disease.  Even a long term strict gluten free diet may not provide sufficient amounts of vitamins and minerals.  There are eight B vitamins that all work together.  Thiamine deficiency often shows up first because our bodies use so much of it and it can't be stored very long. Thiamine deficiency symptoms can appear in as little as three days.  Without thiamine, the other B vitamins may not be able to function properly.   Thiamine is needed to clear lactic acid accumulation caused by the inhalers: Shoshin beriberi provoked by the inhalation of salbutamol https://pubmed.ncbi.nlm.nih.gov/12951730/    Significant Lactic Acidosis from Albuterol https://pmc.ncbi.nlm.nih.gov/articles/PMC5965110/ Albuterol-Induced Type B Lactic Acidosis: Not an Uncommon Finding https://pmc.ncbi.nlm.nih.gov/articles/PMC7263006/ Lessons of the month 1: Salbutamol induced lactic acidosis: clinically recognised but often forgotten https://pmc.ncbi.nlm.nih.gov/articles/PMC6964186/ An Overview of Type B Lactic Acidosis Due to Thiamine (B1) Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC10731935/   Thiamine has antifungal and antibacterial properties.  Thiamine helps keep Candida in check.  Thiamine helps keep SIBO in check.  Thiamine helps with black mold, Aspergillis infection.  Riboflavin helps fight Candida infection in the mouth. Riboflavin Targets the Cellular Metabolic and Ribosomal Pathways of Candida albicans In Vitro and Exhibits Efficacy against Oropharyngeal Candidiasis https://pubmed.ncbi.nlm.nih.gov/36625571/   Thiamine deficiency can make ones voice hoarse and can cause localized edema.  Niacin deficiency can make ones voice hoarse.  (Niacin deficiency and Thiamine deficiency can each cause irritability, agitation, and lability.) Hoarseness in pellagra https://pubmed.ncbi.nlm.nih.gov/21507655/ Hidden Hunger: A Pellagra Case Report https://pmc.ncbi.nlm.nih.gov/articles/PMC8152714/   Anesthesia can cause B12 deficiency.  B12 deficiency can show up as mouth sores and geographic tongue, diarrhea, and dementia. Vitamin deficiency, a neglected risk factor for post-anesthesia complications: a systematic review https://pmc.ncbi.nlm.nih.gov/articles/PMC11823251/ Neurologic degeneration associated with nitrous oxide anesthesia in patients with vitamin B12 deficiency https://pubmed.ncbi.nlm.nih.gov/8250714/ Subacute combined degeneration of the spinal cord following nitrous oxide anesthesia: A systematic review of cases https://pubmed.ncbi.nlm.nih.gov/30144777/ The Effect of Vitamin B12 Infusion on Prevention of Nitrous Oxide-induced Homocysteine Increase: A Double-blind Randomized Controlled Trial https://pmc.ncbi.nlm.nih.gov/articles/PMC4052402/     Eating a diet that is heavy in carbohydrates can precipitate a thiamine deficiency.  As the amount of carbohydrates consumed increases, additional thiamine is needed, otherwise the carbs will be stored as fat.   Thiamine deficiency disorders: a clinical perspective https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/   The deficiency symptoms of some of the B vitamins cause gastrointestinal symptoms that resemble the same symptoms as when being glutened.   Thiamine deficiency can present as vomiting, diarrhea and abdominal pain (Gastrointestinal Beriberi).  Niacin deficiency can present as diarrhea (Pellagra = diarrhea, dermatitis, dementia, then death ).  B12 deficiency can present as diarrhea or dementia.  Not everything is caused by hidden gluten.  Gluten free processed foods are not required to be enriched with vitamins lost in processing like gluten containing foods are. Blood tests are not accurate measurements of vitamin levels, but do talk to your doctor and nutritionist about supplementing with the eight B vitamins, Vitamin C, the four fat soluble vitamins and minerals like magnesium.  Your physician can give you a shot of B12 before anesthesia administration.   By the way, Celiac Disease genes have been traced back to having originated in Neanderthals.  I'm not a singing teacher on the net.  I earned a degree in Microbiology after studying nutrition because I wanted to know what vitamins are doing inside the body.  I've experienced nutritional deficiencies myself. Hope this helps!  Keep us posted on your progress!
×
×
  • Create New...