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

Hives From Sublingual B12?

mushroom

Recommended Posts

mushroom Proficient
mushroom
Posted

I didn't know where else to put this so put it here. After reading the forum it seemed like a good idea to take a B12 supplement. I took a well-recognized brand of sublingual B12 that appeared to be gluten free though did not state that on the label. I purchased it from the herb centre where my naturopath practises. I added nothing else to my diet--in fact these days I am subtracting rather than adding things to my diet. :P

The next day I had broken out in hives all over my face and eyelids, something I have never done before, from anything. Well, all right, I did have some hives on my body, here and there, before going gluten free, and some general rashy itchiness, but never anything on my face. Three days later they are starting to subside, itchiness is gone. I was just wondering if anyone else has had this effect from B12? Needless to say, I haven't taken any more.

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

Celiac.com Sponsor (A8-M):


darlindeb25 Collaborator
darlindeb25
Posted

I can't say for sure, yet am pretty positive it's not from the B12, but probably from a filler in the actual vitamin. Never take a vitamin without knowing it's gluten status. Just because it looks safe, does not mean it is. Most of the good vitamin companies will now state if they are gluten free and it is worth asking--a vitamin is something you take everyday and it is very important that it be safe. I get my B12 from Lame Advertisement.com--they have Jarrow, Biochem made by Country Life, and their own brand which all state the gluten-free status. Nature Made is another good brand, some CVS products state it--just always check, if it doesn't state gluten-free, then don't buy it.

RiceGuy Collaborator
RiceGuy
Posted

Well, one thing which seems to make dermatitis herpetiformis (DH) worse, is iodine (I'm guessing that's what you experienced). So things like kelp would probably be a really bad idea, as it is loaded with iodine. From my experience, a lot of salty foods can do it, even if the amount of iodine isn't particularly high. I'm under the impression that water retention has some impact on it, like if your skin is puffed out in those same areas.

But, if it was something in the supplement, I highly doubt it was the B12. What brand is it? If you post the UPC code, I'm sure others will be able to give some insight into the ingredients, and any possible culprits.

The one I use is from Source Naturals. It is methylcobalamin, and specifically states gluten-free, as well as being free of a number of other things. The UPC# is 021078012931.

ravenwoodglass Mentor
ravenwoodglass
Posted

I would agree that you need to get another, for sure gluten-free brand of sublingual. I also use Country Life, they are free of gluten, soy and dairy and state so on the label.

Not all naturopaths are as celiac savvy as we would like, mine thought a 'little bit' of soy or gluten wouldn't be a problem, they were a big problem. A week after spending $150 on his supplements, becomeiing extremely ill for a week and being told by his office I was "herxing" (excuse me but I have been gluten-free 5 years and know what being glutened feels like). I contacted the companies that make them myself, only one of the 5 was actually safe for me. This naturopath was very well respected and is nationally known, too bad he doesn't have enough knowledge about celiac to treat one safely. I went back to my local health food store and got basically the same stuff in safe forms. They call for me when needed about anything they carry.

darlindeb25 Collaborator
darlindeb25
Posted

I'm sorry, what I posted in here earlier today, didn't belong in this thread, it belonged in another thread about vitamin B12. Later when I was looking for it, I thought I had lost it, I am not sure how I posted it here, it must have seemed out of place to some of you--very sorry about that.

As I read your ingredients list for this vitamin, it does sound like it was gluten free, are you sure that you didn't get something else that bothered you and not the B12?

RiceGuy Collaborator
RiceGuy
Posted
I even found one article that stated that sublinguals are much less expensive and that you can purchase a years supply of 1000 mcg for less than $20--I was wondering where they lived???? Then I saw the article was written in 1995!!!! I wasn't even thinking about B12 then!

Well, the price they give may be outdated, but I'm sure the sublinguals are still cheaper than shots. No doubt less painful.

Here are some places to get sublingual methylcobalamin at a decent price:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

mushroom Proficient
mushroom
Posted
  • Author
I can't say for sure, yet am pretty positive it's not from the B12, but probably from a filler in the actual vitamin. Never take a vitamin without knowing it's gluten status. Just because it looks safe, does not mean it is. Most of the good vitamin companies will now state if they are gluten free and it is worth asking--a vitamin is something you take everyday and it is very important that it be safe. I get my B12 from Lame Advertisement.com--they have Jarrow, Biochem made by Country Life, and their own brand which all state the gluten-free status. Nature Made is another good brand, some CVS products state it--just always check, if it doesn't state gluten-free, then don't buy it.

Gee guys, thank you all for your responses. The bottle is small but I could read when I bought it that it was sugar, salt and starch free. I figured it couldn't have any gluten if it had no starch at all! The company is Solgar, made in USA, ingredients are mannitol (derived from plant sources), Vitamin B12 1000000 (as cobalamin prep), magnesium stearate, stearic acid, natural citric acid (needed my BIG magnifying glass to read that) Reading further in the smallest print they state free of corn, yeast, wheat, soy and dairy products with no preservatives, artificial flavors or colors. So what's a gal to do? Maybe I am loaded with B12 and this was all excess being excreted LOL.

Have never had DH before, don't even really know what it is. Maybe I do have it now :o This was/still is a red, slightly raised, slightly itchy, slightly hurty blotchy rash bunched on both cheeks and one eyelid/eyebrow. Nowhere else on my body.

Neroli

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted
  • Author
Well, one thing which seems to make dermatitis herpetiformis (DH) worse, is iodine (I'm guessing that's what you experienced). So things like kelp would probably be a really bad idea, as it is loaded with iodine. From my experience, a lot of salty foods can do it, even if the amount of iodine isn't particularly high. I'm under the impression that water retention has some impact on it, like if your skin is puffed out in those same areas.

But, if it was something in the supplement, I highly doubt it was the B12. What brand is it? If you post the UPC code, I'm sure others will be able to give some insight into the ingredients, and any possible culprits.

The one I use is from Source Naturals. It is methylcobalamin, and specifically states gluten-free, as well as being free of a number of other things. The UPC# is 021078012931.

Hi RiceGuy:

It doesn't actually give a UPC# that I can see although there is A number on it, perhaps a UPC??: 03229EN02OE

Neroli

Archived

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

Go to topic listing

  • 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. suek54
      - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      5

      Awaiting dermatitis herpetiformis confirmation following biopsy

      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me...
    2. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when...
    3. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt. I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the...
    4. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for...
    5. catnapt
      - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,257
    • Most Online (within 30 mins)
      7,748
    KariNoMoreGluten
    Newest Member
    KariNoMoreGluten
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • suek54
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By suek54 · Posted

      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
×
×
  • 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.