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Old 06-17-2013, 05:20 PM
 
Location: NJ
12,639 posts, read 22,585,965 times
Reputation: 11557

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Quote:
Originally Posted by Sweetbottoms View Post
So I went to my rheumatologist today who said he doesn't seen any way I could have a connective tissue disease. He said he's done every test he can think of and he can't make the connection. They think I'm having an allergic food reaction specifically yeast/gluten . It makes sense and they said that a lot of autoimmune issues are caused by gluten problems. I SO hope this is it after 7 years of being deathly sick with no answer I've kinda lost hope and I can't even think to get my hopes up for this but I so want to badly.. So there's my update next step food test!
Please do not get discouraged. Not many doctors know everything associated with CDT. There is one Dr in Maryland that is the best & very well may DX you. I've been told that we do not have one but I know we do. The reason we're not as flexible is because the joints go in reverse after damage. I'm not as bendy as I used to be & I actually think my elbows pass when this genetic Dr said no.

I'm going to Maryland as soon as I can travel there. Send me a DM; I can give you some links. Not every CTD is like the circus people...
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Old 12-05-2013, 07:30 PM
 
Location: San Antonio, TX
54 posts, read 175,084 times
Reputation: 38
Quote:
Originally Posted by Sweetbottoms View Post
Thank you I'm suspicious too as others have state it does seem like an allergy (I have not kept a food journal) but I have been tested for allergies before just not food it was ur normal run of the mill stuff like weeds, dust etc. I'm in the process of getting an appointment with an allergist to start the process.. Just overnight my tongue went from that above to this..

i've gotten new ones and the old have gotten bigger.
Any updates on this? I think I have something similar because my tongue looks like that. My tongue burns sometimes and my taste for salt has been affected. Sometimes I can't taste salt at all.

This started about 3 years ago after drinking a latte from Starbucks. I thought maybe I burnt my tongue, but since I never done that before I also thought maybe I had a reaction. Next, I had a latte from HEB and had no reaction. I tried a latte again from Starbucks and had a reaction. I decided to not drink any more coffee. I think the first year I rarely had any more reactions.

The second year got worse and the third year even worse. This is the third year and my ability to taste salt has been affected. Maybe because I get the reactions more often. I've also tried a couple of lattes from Starbucks this year and no reactions.

I would go to the doctor, but that's expensive and can be depressing not getting answers. When I get some money I do hope a doctor can help. I would have tried to take care of it in the past, but whenever I went I wasn't having a reaction and sometimes didn't think to mention it. It also can be hard getting help when there are no symptoms when I go to the doctor. I've had other problems and that's always been the case.

These reactions have been random for me. Let's say I eat a Snickers bar and get a reaction. I eat it 10 more times throughout the year and no reaction. That's how it usually is, so I never kept a food journal until today. Today, when I had a reaction I ate fried drummettes that had white flour and season all on it and was fried in vegetable oil. I've had a reaction with this before, so that's why I'm adding it to my food journal. The bad thing is when I have a reaction, it can last a few days and I may not know what else may be causing a reaction.

If anyone has any ideas about what's going on, please post. I would like to gather all information I've discovered, so if I have to go to a doctor to resolve it I can tell the doctor all of this. So far it could be B-12 Deficiency, Erythema Nodosum, Hand Foot Mouth, and Dermatitis Herpetiformis. I do have fungus on my body that could possibly be tinea versicolor, but I don't know if that is related to the tongue problem.

I'm going start taking B-12 pills to see if that resolves the problem.

Last edited by SoHungry; 12-05-2013 at 07:38 PM..
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Old 12-14-2013, 12:10 PM
 
1 posts, read 2,074 times
Reputation: 10
Hi, I have the same exact thing doc increase my folic acid pills and it went away. I have sjogren's syndrome its in the lupus family and i take a lot of meds one of them causes the sores and the folic acid takes it away. Hopes this helps. Margarita
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Old 12-16-2013, 08:03 AM
 
Location: San Antonio, TX
54 posts, read 175,084 times
Reputation: 38
Thanks for the reply! Thanks to your post I'm now taking folic acid pills.

I have been taking B-12 pills. I'm not sure if it's helping or not. When I started taking them my tongue did clear up and it was very nice to see my tongue looking normal. This only lasted 3 days and during those 3 days I wasn't sure if I was having very mild reactions. My tongue did burn a little with certain foods. On day 4 and for a couple of days after I started having mild reactions. The spots and burning returned, but not as bad as usual. The day I started taking folic acid pills my tongue was already healing. Yesterday I ate fried drummettes and no reaction!
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Old 01-26-2014, 05:08 PM
 
1 posts, read 2,001 times
Reputation: 10
I have been baffled by the same symptoms that you described. These spots pop up on my tongue at random.. They kind of feel like a burn. But the rest of my body doesn't feel the best either when they show up.. Like feverish, tired, kind of shaky and my throat sometimes hurts. If you ever found out what this was, I sure would appreciate knowing!
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Old 01-27-2014, 04:51 PM
 
218 posts, read 707,325 times
Reputation: 174
Allergy to toothpaste?
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Old 01-27-2014, 05:18 PM
 
Location: San Antonio, TX
54 posts, read 175,084 times
Reputation: 38
Unfortunately, after 2 weeks the B-12 and Folic Acid pills no longer worked. It was awful; my tongue was worse than ever except I could still taste salt sometimes. I hope to eventually go to the doctor for this, but in the mean time Apple Cider pills help. I started taking them for other reasons, but they are helping my tongue. I'm only getting mild reactions now. Since the failure with the B-12 and Folic Acid pills I notice sugary drinks seem to mainly cause the reactions.
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Old 04-22-2014, 10:41 PM
 
3 posts, read 4,426 times
Reputation: 11
Hello Sweetbottoms I would like to let you there is a cure for what you have no i'm not a doctor but i can help you. It's very simple and I can't believe that doctors don't know this well actually I do believe it! Ok so it has to do with friendly bacteria and your digestive tract increase that with probiotics and your problem will be solved give it a good 3 months and you will be healed. Try using water kefirs the bottles at the store are to expensive and only contain a few strains water kefirs are your answer research and give it a shot!

For the person posting about folic acid try not to take it to much most people have a mutation that keeps you from converting it. Research MTHFR gene and folic acid some people that have chronic fatigue might benefit from this very much just remember everything has a balance and synergistic effect on something else. By the way water kefir has lots of the vitamin b's!
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Old 10-07-2014, 03:39 PM
 
3 posts, read 4,287 times
Reputation: 10
My tongue looks just like yours. I believe that I have an allergy to potatoes, Cayanne pepper, and Paprika. I am going to try to cut out the nightshade family from my diet and see if that helps. I also have an oral food allergy to fruit pollinated by birch trees; such as apples, cherries, peaches, etc.I also believe that this may be an autoimmune issue that occurs when I'm tired or stressed out, but it is so hard to figure out. Please let me know if you found some relief. I currently use something called dental paste which can be prescribed by your dentist or doctor. It doesn't make it go away but it will help. Good luck and if you would like to talk more I'd be willing to!
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Old 10-08-2014, 03:22 PM
 
3 posts, read 4,287 times
Reputation: 10
I ate a quarter of raw red onions today in a bean salad and my tongue looks a lot better. I researched the idea that these may be anti-inflammatory and they are. Worth a try for anyone who has tongue swelling and lesions on their tongue from potential food allergies.
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