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angieInCA

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angieInCA Apprentice

Recently I have been experiencing a slightly swollen tongue. Not all the time but every couple of days for a few hours. It seems to get puffy and ruffled along the edges. It does not hurt and is not sensative but does feel slightly numb near the tip on top. I can't seem to figure out what might be causing it. I've been gluten free for 6 weeks with just a few mishaps.

Any suggestions as to what might be causing this?


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ang1e0251 Contributor

Didn't I read on another thread about a poster who felt her tongue swelling traced to MSG? I would look to your foods again. It sounds like an allergic reaction.

ShayFL Enthusiast

If at some point the swelling seems constant, consider thyroid. Hypothyroid states will cause the tongue to swell. Just another thought.

RiceGuy Collaborator

I think I heard someplace that dehydration can cause the tongue to swell, but I'd hope by that time you'd feel really thirsty.

My guess is also on the allergic reaction.

angieInCA Apprentice

My first thought was dehydration too but I drink pleanty of water and I've been very aware of my intake since this has started. I've avoided MSG but I suppose I could have missed some somewhere.

I'm thinking allergic reaction also but I haven't started consuming anything new, more like I've eleminated alot from my diet.

Hadn't realized a Hypothyroid could cause tongue swelling.

GlutenGuy36 Contributor

Look into a possible Candida Albicans problem. It is yeast and it can go hand in hand with Celiac Disease. My tongue was doing the same thing and my GI doctor scoffed at the thought of Candida. Some times they are unwilling to diagnose it. You can cut out sugar and anything that is easily converts to sugar and see if that helps. I know its hard when your diet is already restricted. I know first hand.

  • 4 months later...
angieInCA Apprentice

I have asked 3 different doctors about my tongue swelling (it is doing it more frequently) and all of them have said to drink more water and to pay attention to a possible food allergy.

Today I saw my endocrinologist and asked her what could possibly cause it. She asked to see my tongue then immediately said "It's a B12 deficiency." I got a B12 shot in the office. She said a deficiency in B12 would cause swelling and ruffling of the edges, a very commin side effect. :huh:

My question is why does it seem Doctors know so little? Three either didn't care to think or really didn't know :blink: I don't ask them to be God's but I wish they would pay a bit more attention. :rolleyes:


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jerseyangel Proficient

Wow--at any rate, I'm glad you finally got an answer. Hope this does the trick :)

MomToACeliac Newbie

I hope you found the answer to your condition. Allergy sounded the most obvious and although individuals on a gluten-free diet do in fact eliminate many foods from their diet, do keep in mind you may be introducing new foods and ingredients into your body as well. You can never be sure. My son never ate quinoa pasta or corn pasta prior to being gluten-free. And hardly ate rice. So many natural and organic ingredients are found in gluten-free foods and unless you were an avid healthy and organic consumer to begin with, perhaps some of these foods or ingredients can be the cause for allergic reactions in some individuals. I have had Hypothyroidism for over 2 years now and I have never had swelling of the tongue. But we in fact are all different. Odds are you will know if you have a thyroid condition. Sore joints, muscles, fatigue, loss of hair, weight gain/loss, depression. There are other symptoms as well. Hopefully your doctor checked your labs for low vitamin levels, anemia, diabetes and hypothyroidims since these can be associated with Celiac Disease.

Best of luck to you!

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    • knitty kitty
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
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