Jump to content
  • 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

Low-gluten Host


dbates

Recommended Posts

dbates Newbie

Hi this is my first time making a post on this forum. I was diagnosed as a Celiac about a month and a half ago. I have had some very bad symptoms without realizing where they came from for a really long time. I have been free from Gluten for about a month, and one thing I wanted to ask about is if I am maybe getting a little overboard. I am a Roman Catholic and since I learned I am a Celiac I have been trying to use low-gluten hosts from some Benedictine nuns that contain 100 ppms or 37 micrograms of gluten. I have come to understand that these have such a small amount of gluten in them that they should not bother Celiacs, but I am pretty sure I am having a reaction to them. I know that thirty minutes after receiving one I had bad migraines and then I was fatigued all the next day. I have had one person comment saying I am making myself believe I am going to get sick, so I start to feel symptoms, but I am pretty sure I can't think up migraines. My question is has anyone had a similar experience with the hosts, and is it possible to be that sensitive to such a low amount of Gluten?

I am trying to make sure that I am not getting gluten from anywhere else, so that I can test it, but since I don't know if it is even possible I am wondering if maybe I can think and thus feel Celiac Symptoms. Any comments would be great.


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



Celiac.com Sponsor (A8-M):



jerseyangel Proficient

Hi and welcome to the board! :)

It is entirely possible that you are reacting to the small amount of gluten in the low-gluten hosts. I know I would react which is why I've never tried them. The person who said you could not possibly be reacting to such a small amount was incorrect.

If you feel comfortable, you can receive Communion by taking the wine only. It is perfectly acceptable. Talk to your priest--perhaps you could get your own small chalice for your wine or he can use one for you that has not had any crumbs from the large Host mixed in.

Best of luck, and I'm glad you found us.

dbates Newbie
Hi and welcome to the board! :)

It is entirely possible that you are reacting to the small amount of gluten in the low-gluten hosts. I know I would react which is why I've never tried them. The person who said you could not possibly be reacting to such a small amount was incorrect.

If you feel comfortable, you can receive Communion by taking the wine only. It is perfectly acceptable. Talk to your priest--perhaps you could get your own small chalice for your wine or he can use one for you that has not had any crumbs from the large Host mixed in.

Best of luck, and I'm glad you found us.

Thank you, I am pretty happy I found this site as well. =) That is good to know that it is possible, now I don't feel like I am slightly crazy. I am still new to this whole thing so it is hard to know what does and does not have adverse affects. I think I will try first to recieve a smaller amount of the host and see how that goes, but if not I will talk to my priest about the wine option. Thanks so much for your response.

tarnalberry Community Regular

You can definitely "think yourself" into a migraine. (I have chronic migraines, and have experienced this. It's annoying, because just because you can 'think' yourself into one, doesn't mean you can 'think' yourself out of one. And it's kind of misleading to phrase it as "thinking" into a migraine, because it has more to do with the idea that you might get one causing a physiologic stress reaction which does alter chemistry and physiology.)

BUT, you can most definitely react to small amounts of gluten. There's a debate about it on another thread, but I'll summarize what I've seen here and in published studies: *most* people don't react to gluten in doses less than around 20ppm (the exact amount in studies varies, and this conclusion is verified by intestinal biopsy), but some people DO react. We have plenty of representatives of the "really really trace amounts cause a reaction", and plenty who don't. Perhaps you can try having just a sliver of the wafer (an eighth of a piece or something like that) and see if you're in a grey zone, but perhaps you're better off with just the wine/juice instead.

Can you ever definitively prove if your reaction is psychosomatic in origin or not? Not really. But you have a good reason to think it might not be, so, IMHO, why not eliminate that reason?

  • 2 weeks later...
Cait6799 Rookie

Is it simply possible that the gluten is cross contaminating from the priest holding the other hosts first?

I know the issues behind being Catholic and their stance on the host. It was a disaster for my daughter's first communion.

While her sensitivity level is not one that is bothered by the trace amounts in the host I purchased, my concern is that because hers is separate - and she goes last - that there would be some left on his hands by the time he got to her.

  • 3 months later...
Squidge Newbie

There are Catholic approved gluten FREE host wafers, supposedly. I'm sorry, I get really upset about situations such as this. Jesus never once commanded that the bread be made using wheat, rye, or barley. He also never commanded us to make ourselves sick trying to properly worship him. You do also need to have a serious talk with your priest about cross-contamination. Tell your priest the wafers are still making you sick and see what he can do. And 100 ppm is still a lot of gluten for someone with Celiac's.

  • 1 month later...
Nightingale8472 Rookie

It's definitely possible to think yourself into a migraine. I have chronic migraines and do it to myself all the time. Walking out of the house without my migraine meds is a surefire trigger. I start thinking "OMG, I don't have my meds... what if I get a migraine. I just know I'm gonna get a migraine, and I don't have my meds... OMG I'm gonna get a migraine." and BAM, I have a migraine because I've stressed myself into one.

I have no idea about the gluten in the hosts, though. I'm new at this gluten free thing.


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

I have a positive blood test for Celiacs but have been eating gluten until I get my biopsy Wed. Then I plan to go gluten-free. Sunday, I realized this was my last communion host & I started to tear up. Suddenly, an eyelash fell in my eye & it was watering from it. I think God is trying to tell me its OK take the wine.

Brenda Bell Newbie

I have a positive blood test for Celiacs but have been eating gluten until I get my biopsy Wed. Then I plan to go gluten-free. Sunday, I realized this was my last communion host & I started to tear up. Suddenly, an eyelash fell in my eye & it was watering from it. I think God is trying to tell me its OK take the wine.

Most likely it is cross contamination... At our parish... the host is served first for Gluten Sentitive people at the handicap alter... The person who serves the Low_Gluten host does not touch the other host... Since they are following the precautions we are fine.... except sometime if I have the wine I get a reaction... maybe cross contamination there but I dont want think about that... Good Luck... We also keep Kinnicks Donuts in the freezer so the Celiacs in the parish can have coffee hour too.... just a thought

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Son's legs shaking

    2. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Son's legs shaking

    3. - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

    4. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Son's legs shaking

    5. - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748

    MaryannHall
    Newest Member
    MaryannHall
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.