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The Worst Canker Sore Outbreak Ever
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Ok, old-timers. I really need your help. 12 days ago, I got a couple of canker sores. This is normal for me after getting glutened (which I think had happened at a luncheon at work three days prior to the outbreak). The sores seemed to be going away and then BAM! They got really really bad and have now spread across every surface of my mouth this week (since Sunday)- under my tongue, on my tongue, along the insides of my lips, on the sides, on my palate (OUCH!), on my tonsils, throat, etc.

When the outbreak was just a few sores, I saw my naturopath and she gave me some herbal type things, but they didn't help. Then it got really bad, so I have now seen my allergist/immunologist (yesterday) and all he could say was that they were apthuous ulcers (of course!) but he thinks they are viral in nature (since I currently have Epstein-Barr/mono, but I am really on the downside of that disease) and because I had a fever. He prescribed VALTREX. I had a fever of 100 while I was there. (He also did a rapid strep test, but it was negative.)

Today, I got up and the sores had more than doubled (to probably in the range of 200 sores!) and my tongue is so swollen that I can no longer talk and swallowing even water is labored. So I saw my general physician. She took some swabs for bacterial and viral cultures, but won't have results for many days. There are sores all across my palate and the back of my throat. She prescribed a mouth rinse that contains prednisone, mylanta, benadryl and carafat. This is a swish-and-spit to be used every four hours. This doesn't really help, either. I still have a temp of 100 and the pain in my throat is unbearable.

I cannot even imagine what is causing this horrible outbreak. Has anyone dealt with this, and if so, what did you do for it? I had it once before, after having an allergic reaction to antibiotics. (That was pre-celiac diagnosis.)

Normally I get only a few sores....not 200...

I have lost 10 pounds in 2 weeks because I cannot eat much of anything and can barely drink plain water. Today I have eaten a half bowl of chicken broth, some ice cream (which felt good) and some sprite. That's it.

I should say that I normally follow a PALEO diet for about 90% of my food - just meat, fish, veggies and fruit. (No dairy, no legumes, no grains, no potatoes, no corn.) I have multiple food allergies and horrible drug allergies. There has been NOTHING NEW introduced into my diet or supplements during the past 3 weeks. I get all of my veggies and a lot of fruit from a 100% organic farm 10 miles from my house, and eat VERY healthy. (I am somewhat of an amateur chef.)

I am an opera singer, and not being able to talk or sing is just about the most disturbing thing that could ever happen. The pain is so severe that I am not sleeping, or when I finally sleep, I wake up choking because I cannot even swallow my own saliva. I am sleeping in a propped-up position to be able to breathe.

I am tempted to go see my doc at the celiac disease center, but again, what can really help this!? (and it takes months to get in there...)

Any helpers out there? (since the doctors are basically of little use...)

Thanks

Kathleen

gluten-free since Aug 2003 (Diagnosed first with Celiac, now with non-Celiac Gluten Intolerance, since I don't carry the Celiac Genes, but I react HIGHLY to gluten.)

PALEO diet since 2004 - off and on

Multiple food allergies, drug allergies and latex allergy

Diagnosed with Epstein-Barr (re-occurrence of mono) in May 2008 after 5 months of symptoms

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Ok, old-timers. I really need your help. 12 days ago, I got a couple of canker sores. This is normal for me after getting glutened (which I think had happened at a luncheon at work three days prior to the outbreak). The sores seemed to be going away and then BAM! They got really really bad and have now spread across every surface of my mouth this week (since Sunday)- under my tongue, on my tongue, along the insides of my lips, on the sides, on my palate (OUCH!), on my tonsils, throat, etc.

When the outbreak was just a few sores, I saw my naturopath and she gave me some herbal type things, but they didn't help. Then it got really bad, so I have now seen my allergist/immunologist (yesterday) and all he could say was that they were apthuous ulcers (of course!) but he thinks they are viral in nature (since I currently have Epstein-Barr/mono, but I am really on the downside of that disease) and because I had a fever. He prescribed VALTREX. I had a fever of 100 while I was there. (He also did a rapid strep test, but it was negative.)

Today, I got up and the sores had more than doubled (to probably in the range of 200 sores!) and my tongue is so swollen that I can no longer talk and swallowing even water is labored. So I saw my general physician. She took some swabs for bacterial and viral cultures, but won't have results for many days. There are sores all across my palate and the back of my throat. She prescribed a mouth rinse that contains prednisone, mylanta, benadryl and carafat. This is a swish-and-spit to be used every four hours. This doesn't really help, either. I still have a temp of 100 and the pain in my throat is unbearable.

I cannot even imagine what is causing this horrible outbreak. Has anyone dealt with this, and if so, what did you do for it? I had it once before, after having an allergic reaction to antibiotics. (That was pre-celiac diagnosis.)

Normally I get only a few sores....not 200...

I have lost 10 pounds in 2 weeks because I cannot eat much of anything and can barely drink plain water. Today I have eaten a half bowl of chicken broth, some ice cream (which felt good) and some sprite. That's it.

I should say that I normally follow a PALEO diet for about 90% of my food - just meat, fish, veggies and fruit. (No dairy, no legumes, no grains, no potatoes, no corn.) I have multiple food allergies and horrible drug allergies. There has been NOTHING NEW introduced into my diet or supplements during the past 3 weeks. I get all of my veggies and a lot of fruit from a 100% organic farm 10 miles from my house, and eat VERY healthy. (I am somewhat of an amateur chef.)

I am an opera singer, and not being able to talk or sing is just about the most disturbing thing that could ever happen. The pain is so severe that I am not sleeping, or when I finally sleep, I wake up choking because I cannot even swallow my own saliva. I am sleeping in a propped-up position to be able to breathe.

I am tempted to go see my doc at the celiac disease center, but again, what can really help this!? (and it takes months to get in there...)

Any helpers out there? (since the doctors are basically of little use...)

Thanks

Kathleen

gluten-free since Aug 2003 (Diagnosed first with Celiac, now with non-Celiac Gluten Intolerance, since I don't carry the Celiac Genes, but I react HIGHLY to gluten.)

PALEO diet since 2004 - off and on

Multiple food allergies, drug allergies and latex allergy

Diagnosed with Epstein-Barr (re-occurrence of mono) in May 2008 after 5 months of symptoms

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Im no expert on canker sores. But if this happened to me, I would go get some colloidal silver and swish full strength in my mouth and gargle then spit it out. I would also buy the nasal spray and do 2 squirts up each nose. I would do this three times a day until all clear. But no longer than 7 days.

I know there are the reports of people turning blue from colloidal silver but what you have to realize is that those people were taking suspended silver mostly made on home devices which make the liquid 200 ppm or more. And they were taking LARGE doses of that.

The colloidal silver at the health food store is only 10 - 30 ppm and is safe for short uses. But do your own research on this.

This is just what I would do.

CS got rid of my pink eye when nothing else would. Within 2 applications it completely disappeared. I was so relieved. I also use it at the first hint of sinus trouble. A few days of squirts up the nose and that is the end of it.

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Ok, old-timers. I really need your help. 12 days ago, I got a couple of canker sores. This is normal for me after getting glutened (which I think had happened at a luncheon at work three days prior to the outbreak). The sores seemed to be going away and then BAM! They got really really bad and have now spread across every surface of my mouth this week (since Sunday)- under my tongue, on my tongue, along the insides of my lips, on the sides, on my palate (OUCH!), on my tonsils, throat, etc.

When the outbreak was just a few sores, I saw my naturopath and she gave me some herbal type things, but they didn't help. Then it got really bad, so I have now seen my allergist/immunologist (yesterday) and all he could say was that they were apthuous ulcers (of course!) but he thinks they are viral in nature (since I currently have Epstein-Barr/mono, but I am really on the downside of that disease) and because I had a fever. He prescribed VALTREX. I had a fever of 100 while I was there. (He also did a rapid strep test, but it was negative.)

Today, I got up and the sores had more than doubled (to probably in the range of 200 sores!) and my tongue is so swollen that I can no longer talk and swallowing even water is labored. So I saw my general physician. She took some swabs for bacterial and viral cultures, but won't have results for many days. There are sores all across my palate and the back of my throat. She prescribed a mouth rinse that contains prednisone, mylanta, benadryl and carafat. This is a swish-and-spit to be used every four hours. This doesn't really help, either. I still have a temp of 100 and the pain in my throat is unbearable.

I cannot even imagine what is causing this horrible outbreak. Has anyone dealt with this, and if so, what did you do for it? I had it once before, after having an allergic reaction to antibiotics. (That was pre-celiac diagnosis.)

Normally I get only a few sores....not 200...

I have lost 10 pounds in 2 weeks because I cannot eat much of anything and can barely drink plain water. Today I have eaten a half bowl of chicken broth, some ice cream (which felt good) and some sprite. That's it.

I should say that I normally follow a PALEO diet for about 90% of my food - just meat, fish, veggies and fruit. (No dairy, no legumes, no grains, no potatoes, no corn.) I have multiple food allergies and horrible drug allergies. There has been NOTHING NEW introduced into my diet or supplements during the past 3 weeks. I get all of my veggies and a lot of fruit from a 100% organic farm 10 miles from my house, and eat VERY healthy. (I am somewhat of an amateur chef.)

I am an opera singer, and not being able to talk or sing is just about the most disturbing thing that could ever happen. The pain is so severe that I am not sleeping, or when I finally sleep, I wake up choking because I cannot even swallow my own saliva. I am sleeping in a propped-up position to be able to breathe.

I am tempted to go see my doc at the celiac disease center, but again, what can really help this!? (and it takes months to get in there...)

Any helpers out there? (since the doctors are basically of little use...)

Thanks

Kathleen

gluten-free since Aug 2003 (Diagnosed first with Celiac, now with non-Celiac Gluten Intolerance, since I don't carry the Celiac Genes, but I react HIGHLY to gluten.)

PALEO diet since 2004 - off and on

Multiple food allergies, drug allergies and latex allergy

Diagnosed with Epstein-Barr (re-occurrence of mono) in May 2008 after 5 months of symptoms

Hi Kathleen I also have the epstein barr virus and have been dealing with it for 2 years and I know how painful the canker sores can be. What I took to help them is L-Lysine its an amino acid and it really helped.

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Hi Kathleen I also have the epstein barr virus and have been dealing with it for 2 years and I know how painful the canker sores can be. What I took to help them is L-Lysine its an amino acid and it really helped.

Which brands of L-Lysine are Gluten-free ?

Also - you have had EB for 2 years!? The doctors told me 6-12 month recovery to get back where I was. I have some really great days and some horrible (as evidenced by this week). I have had symptoms of EB since January, but wasn't diagnosed til end of May. The infectious disease doc said my bloodwork indicated that I probably 'caught' it sometime around Thanksgiving last year. I am really hoping this is the 'end' of the road for the EB. It's really wearing me out.

Thanks!

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Are you currently taking any medications that could be causing them? I had a year of nasty canker sores (pre celiac diagnosis) many years back, and eventually discovered the cause was the birth control pills I was taking (Tricycline). I can relate to the pain and not being able to talk or eat - at one point I had a canker half an inch in diameter. My dentist prescribed a mouth wash that is typically given to oral cancer patients. I can't remember the name, just remember it was green. It numbed the pain a bit. Anbesol works too and is gluten-free. Put a few drops in water and rinse your mouth. Also, do you have any GI symptoms? My sister used to have chronic canker sores and it turned out to be early warning signs of Crohn's Disease. Sorry I don't have any suggestions for how to get rid of the cankers....just pain relief. Good luck!!!

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Just remembered another remedy - tetracycline. My sister used to use this. Get a prescription from your doctor for the capsules, and then empty the capsules into water and use it as a rinse. The powder doesn't dissolve in the water, so you have use it quickly after mixing or shaking. Only the powder form works for canker sores, not any other form of tetracycline.

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Which brands of L-Lysine are Gluten-free ?

Also - you have had EB for 2 years!? The doctors told me 6-12 month recovery to get back where I was. I have some really great days and some horrible (as evidenced by this week). I have had symptoms of EB since January, but wasn't diagnosed til end of May. The infectious disease doc said my bloodwork indicated that I probably 'caught' it sometime around Thanksgiving last year. I am really hoping this is the 'end' of the road for the EB. It's really wearing me out.

Thanks!

Hi yep two years was in the mono stage for a little over a year but they found out I also had Lyme so that did not help things, but I do know many people who are dealing with ebv for many years but do not worry as many people get over it much faster. At the time I took lysine I drank a whey protein drink which was very high in it but now would not beable to drink it as am sure there would be gluten in it . But am sure there has to be gluten-free out there for the lysine. If you need a forum to talk about the EBV pm me and I will send you a url for a good board to come and talk, it is a very rotten virus and it does wear a person down with all kinds of strange symptoms.

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Thanks. I am not currently taking ANY oral medications, so that's out. (I started the VALTREX last night, but we called the company and they said it was gluten-free.) I haven't even added new foods in my diet. I am stumped. I am using that mouth wash you talked about. It's different at every pharmacy, depending on what they add, but basically calms it down and numbs it a bit.

I used to get horrible cankers from antibiotics that contained gluten, but now I am REALLY careful about what I take.

The only thing I can think of is that I STOPPED taking my vitamins a couple of weeks ago, since I was feeling a lot better. I don't know if pulling those could have caused this...I don't even want to think about it.

KT

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Thanks for the suggestion... but I am allergic to tetracycline :(

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Nutritional deficiencies: Although a number of nutrient deficiencies can lead to canker sores, thiamine deficiency appears to be the most significant.

Deficiencies of iron, lysine, vitamin B12, and folic acid also can lead to canker sores. Several studies showed that nutrient deficiencies are common among recurrent canker sore sufferers than in the general population. A study of 330 patients with recurrent canker sores showed that forty-seven (14.2 percent) were deficient in iron, folate, vitamin B12, or a combination of these nutrients. When these patients' deficiencies were corrected, the majority had complete remission. Other studies have shown similar deficiency rates for the same nutrients and equally good response to supplementation.

***There are documented cases of "rebound scurvy" when people abruptly stop taking vitamin C. So it is possible that by stopping your vitamins, your body is not getting enough thiamine or the others now and your body has to "relearn" how to get it from your food (if you get enough from your foods and your body can break down your food good enough to extract them). The vitamins were giving the body what it needed daily without any effort on the body's part.

I used to recommend my clients wean off of vitamins (especially if they were mega-dosing).

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That's a very interesting thought. I kept thinking, wow, I stopped my vitamins and BAM! Maybe I should take them right away. I don't have any Lysine here, but will have someone stop and get me some and bring it over. My temp is in the 102 range (going up) so I need to just lay low.

Thanks!

k

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I must state my credentials to answer your question: None.

I have always cured the horrible beasties with Australian tea tree oil. Directly on the sore full strength and then as a mouthwash. Use both constantly through the day until the bad beasties are gone. Usually a couple of days. I do believe they are caused by a virus.

But I have no credentials. Good luck!

I revisited your first topic-blog and realize the extent of the sores in your mouth probably indicates a serious viral infection in your body. If my "no credential" analysis is correct.

Are you having any other symptoms of infection? The beauty of tea tree oil in the mouth is the absorbency into your system through the blood vessels in your mouth. It's like taking Vitamin D sub-lingually. Goes right into the bloodstream.

I'd put 1/8 cup 50-50 tea tree oil/purified water into my mouth and hold it there for 30 minutes. (Re-use it. Too expensive to trash it.) Repeat every hour. The antiviral effects of the oil will be absorbed into your system.

Where do you get tea tree oil? Any health food store. Maybe at a pharmacy.

Would I like your music? I love Mozart and Beethoven and Mitsuko Uchida's version of both.

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Hi,

I hope you get better soon. I am worried about you. My mom had EBV years ago. She took high dosages of antiviral medication. She swears by Lysine for canker sores too. The fever worries me, it makes it seem like more than a vitamin deficiency. Take care

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There is too much to type but the following highlites are from Prescription for Nutritional Healing by Phyllis Balch

CS=Canker Sores

CS occur most often in females. ...triggered by any...poor dental hygiene, irritation from dental work, food allergies, nutritional deficiences,

hormonal imbalances, viral infection, an underlying immunologic disease...trauma(biting cheek, toothbrush) and or fatigue. They may result from an abnormal response to normal bacteria in the mouth. CS are occas. assoc. w/ Crohn's disease, which affect the bowels. Deficiencies of iron, lysine, vit. B12 and folic acid have been linked...

Suggested:

Acidophilus

L-Lysine

Vit B complex plus extra B 3

B 5 and 12

folic acid

Vit C w/ bioflavonoids

zinc

garlic

iron-only prescribed by a doc

multivit.and mineral complex

Vit A w/ mixed carotenoids

Eat:

salad

raw onions (ouch)

yogurt, kefir, cottage cheese and buttermilk-soured products

avoid sugar(sprite), citrus, processed and refined foods

avoid chewing gum, lozenges, mouthwashes,tobacco,coffee

no fish or meat of any kind for 2 weeks-increases acidity which slows healing

Buy: Belladonna,Echinacea, and Borax

check for nutritional def if repeated attacks

to avoid CS: maintain proper balance of minerals, acidity and alkalinity, have a hair analysis done to test for mineral levels

If you get recurrent CS, your toothbrush may be the culprit- no sodium laurly sulfate...change every month

red raspberry tea-flavonoids

goldenseal/tea tree oil applied on the sore 2x day and at night

I would suggest Oil Of Oregano or coconut oil also but I am not a doc. Hope this helps you and FAST

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Epstein-Barr virus attacks nerves and the immune system, and gluten attacks the same things in some celiac patients. The nerve-related autoimmune diseases multiple sclerosis and ALS have been associated with both gluten and Epstein-Barr.

Mouth sores from a virus like Epstein-Barr would probably be from nerve aggravation. Since celiac disease is essentially a mitochondrial disease, I would try supplementing with Alpha Lipoic Acid and L-Carnatine.

Lipoic Acid Helps Quench the Fire of Burning Mouth Syndrome

Mitochondrial Restoration

In my readings, I've discovered that superoxide dismutase (SOD) is responsible for maintaining nerves. SOD is made in mitochondria. the above antioxidants support mitochondrial formation of SOD. Malformation of SOD aggregates has been implicated in diseases like thyroid disease, Parkinson's disease, ALS, and macular degeneration.

..

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Well, guys, we finally have what we think is an answer. I spent three hours in the ER and 90 minutes in a different doctor's office (where they sent me after the ER) and 5 more docs looked at me. It's certainly viral in nature, but because of the clusters of ulcers in my mouth, it looks more like hand, foot & mouth disease (coxsacki), even though I have no symptoms on my hands and feet. It is apparently going around right now in this part of the state and they have seen a LOT of cases. So, finally some doctors had the GUTS to give me the prednisone to knock it down, lidocaine for numbing the mouth pain and percocet for the pain if I need it. They did some blood work, took throat swabs, etc, but they think it's not related to gluten AT ALL. (it may have started that way, but it isn't that now.) They all said today that they things that were prescribed by my other doctors would have had no effect. (I know that.)

Once this settles down, I will revisit these doctors and try to figure out a plan to stop them forever, if that can happen.

Thanks for all the suggestions.

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Well, guys, we finally have what we think is an answer. I spent three hours in the ER and 90 minutes in a different doctor's office (where they sent me after the ER) and 5 more docs looked at me. It's certainly viral in nature, but because of the clusters of ulcers in my mouth, it looks more like hand, foot & mouth disease (coxsacki), even though I have no symptoms on my hands and feet. It is apparently going around right now in this part of the state and they have seen a LOT of cases. So, finally some doctors had the GUTS to give me the prednisone to knock it down, lidocaine for numbing the mouth pain and percocet for the pain if I need it. They did some blood work, took throat swabs, etc, but they think it's not related to gluten AT ALL. (it may have started that way, but it isn't that now.) They all said today that they things that were prescribed by my other doctors would have had no effect. (I know that.)

Once this settles down, I will revisit these doctors and try to figure out a plan to stop them forever, if that can happen.

Thanks for all the suggestions.

I am soooo glad for you that they finally figured it out. I did wonder why noone had given you a script for prednisone other than the mouthwash. Hopefully with that and the lidocaine and pain killers the end will soon be in sight. Good for you for continuing to find the cause and not giving up.

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Hope you feel better soon.

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I am soooo glad for you that they finally figured it out. I did wonder why noone had given you a script for prednisone other than the mouthwash. Hopefully with that and the lidocaine and pain killers the end will soon be in sight. Good for you for continuing to find the cause and not giving up.

Can you believe that I actually asked my immunologist and my GP (on 2 consecutive days) for both prednisone and lidocaine and they said no. (!) I am firing them both. The pain meds are wiping me out! I see why they tell you not to drive! WOW !

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Can you believe that I actually asked my immunologist and my GP (on 2 consecutive days) for both prednisone and lidocaine and they said no. (!) I am firing them both. The pain meds are wiping me out! I see why they tell you not to drive! WOW !

I CANNOT believe you first posted on this awful problem yesterday and here you are with a solution! Double congratulations. Keep the tea tree oil in mind as a preventative. Can you cut the pain meds in half?

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I CANNOT believe you first posted on this awful problem yesterday and here you are with a solution! Double congratulations. Can you cut the pain meds in half?

I am not sure if percocet can be cut in half. I will ask the pharmacist. I feel almost no pain now, but I still cannot eat even mashed foods. It is way too painful, considering that my tongue is nearly doubled in size and the sores are still everywhere. I hope that the meds start to work some magic. I have never felt so awful.

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I just want to add that I called my allergist/immunologist today to tell him how off base he was in his diagnosis on Tuesday and how sick I got because he missed it. I asked him if it could be something contagious, and he kept saying no. He didn't do a culture, didn't do blood work, and wouldn't give me steroids or pain meds. It continued to worsen to the point where I posted here and then went to the ER. There is even a known outbreak of this virus right now in my state; he should have thought of it as a possibility. I told the secretary about this and told her of the diagnosis and she got really MAD AT ME and wouldn't even let me talk with the doctor. She said she would tell him my message. That's what's wrong with medicine. He wasn't even interested in looking at another possibility other than what he knew from old days. (the meds he gave me - VALTREX - were totally useless and incorrect even if it were just canker sores - considering the level of the outbreak - and the ER doc couldn't even BELIEVE the allergist prescribed them.) I think I will be finding a new allergist !

K

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I think I will be finding a new allergist !

K

Good idea. <_<

Consider asking the ER doc for a recommendation. :)

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Can you believe that I actually asked my immunologist and my GP (on 2 consecutive days) for both prednisone and lidocaine and they said no. (!) I am firing them both. The pain meds are wiping me out! I see why they tell you not to drive! WOW !

I agree completely that both those doctors should be fired. Make sure you get complete sets of your records from them including test results and doctors notes. You have a legal right to them and it is a good idea to keep those if you are not already.

Don't worry about the pain meds knocking you out if you can sleep then do, that will help you to heal faster. Your pharm as you said can let you know if the pills can be cut in half. If they have a score mark on one side there is a good chance you can.

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    • I've had a range of symptoms in the last 2 months and in the past few weeks I have discovered that my TTG abs (igA) levels were 41 (my igA tests were fine). The doctor said that he is pretty much certain that it is celiac disease and I am awaiting an endoscopy to confirm it.  Before I found out that my TTG abs (igA) levels were high, I noticed that my body was reacting really badly to dairy products. I went on an elimination diet and stopped all gluten and dairy products and felt much better. I carried this on after my results and thought that I must have developed a dairy intolerance due to my celiac. 2 days ago I accidentally consumed a glass of wine which I thought was dairy free but it contained Milk. I have not had any gluten.  I am currently in the middle of a flare up. All of a sudden rashes have started to appear on my hands and my anxiety has returned (usually not a anxious person). No diarhhoea, vomiting or digestive issues. I am currently suffering from muscle twitching, rashes predominantly on hands and feet, brain fog, pins and needles/numbness on hands, feet and arms. However, I have been tested for milk allergy and this came back negative. Is it possible that it is dairy that is causing my symptoms/autoimmune reaction and could this be a reason for elevetated TTG abs (igA) levels. Or has the doctor only picked up my celiac and missing something else. If it was dairy intolerance then I would have digestive issues but I don't seem to have any. Could it be the casein protein?  Anyone been in a similar situation or can anyone provide some insight? 
    • Hello Everyone, This is my first post here and I am writing to seek help from experienced people here. I have been suffering for over 4 years now and still no where close to having a solution/ satisfactory diagnosis of my problem. My problems started in Mar 2012 with sudden diarrhea which would not go away for days. At first, I was given general antibiotics medication which would help bring down the frequency for some days and then it would come back. Since then it has been going on. I am giving a time line and the series of tests and procedures I have gone through. Would like opinion from experienced and experts here. I can send the scans and reports if required. Would really appreciate the help. Male, Indian origin Mar 2012 - onset of symptoms - multiple bouts diarrhea - spaced 3-4 weeks, bloating, weight loss (to start with I was 74 Kgs), GP managed with antibitocs and loperamide for months Dec 2012 - consulted a GI doc towards end of 2012, Colonoscopy done - conclusion was "IBS" - was advised to manage stress. use Rifaximin and immodium Jan 2013 - Aug 2013 kept moderately fine for 3-4 months ..again started getting frequent diarrhea + weight loss (was around 70 Kgs) Oct 2013 - Consulted another doc, MD - stool and blood test - Ecoli and high Eosinophil Count, medication done for 5-6 months, montinored eosinophil from nov - Mar: always kept high.. came down but then again shot up in a month Mar 2014 - Consulted another GI expert - Endoscopy and duodenal biopsy done - H Pylori and Unremarkable Villious pattern, (weight 68 Kgs) - On and Off diarrhea continued. Given: Ivermectin July 2014 - again same doc - Blood test done: High Eosinophil count,  Colonoscopy and Ileum biopsy - preserved villous architecture, features of eosinophilic enteritis; Endoscopy  + duodenal biospy again - numerous H pylori bacteria, Preserved villous crypt ratio, features of eosinophilic enteritis > conclusion: I have eosinophilic enteritis. Started on Prednisolone (steroids) Aug 2014 - 3-4 days of severe diarrhea> weight came down to 65 Kgs. Hospitalised for 3 days - continued on Prednisolonerios Sep 2014 - After 10 days only again a serious bout of diarrhea - hospitalized again - put on IV fluid for 8 days - weight 59 Kgs. Colonoscopy + biopsy done: features of superimposed c. difficile colitis, non-specific mild colitis > c. difficle test came out negative. CT Enterolysis +Scan done: mesenteric lymphadenopathy > nothing wrong acc to docs. IgA deficiency found - diagnosed Celiac - advised for Gluten free diet.   Sep 14 - May 16: continued gluten-free diet, gained weight upto 63 Kg in Jan 16, but then started losing again and came to 59 Kgs in May. No signficant diarrhea. Minor issues. June 16 onwards: Again diarrhea started, still on gluten-free diet, weight lost - 54 Kgs now. hospitalised again under same GI doc - blood test - eosinophil high, CT Enterolysis done: Showing mucosal thickening in Jejunum and Ileum; Enteroscopy (going in jejunum) + jejunal biopsy - jejunal erosions + villous blunting, marked atrophic with V:C ratio of 0.5: 1 to 0:1. HttG blood test done - Came out negative> Conclusion : No gluten exposure (how?) + Refractory Celiac disease. June - July - have been suffering from continuous diarrhea (goes off for 5-6 days and comes back, bloating, trappings in abdomen - waiting for I don't know what. On Rifaximin + Ivermectin + Codeine Sulphate (for diarrhea) I am very depressed and have no clarity on what's going on. If it is celiac, why am I not doing better on gluten-free diet. If the villous damage is still there in small intestine, then why did I kept fine for Sep - May period? HTTG - negative now but was NOT taken in Sep when I was first diagnosed with celiac. Can we trust negative HTTG now and conclude that it has come down? I am 20 kgs down from my ideal weight and still going down. Have no clue what NOT to eat to stop this. Why is eosinophil always high. Can any of you expert help me to put my case to docs in other countries? With lots of hope, Alok          
    • So, I know I'm obsessing but...... University of Chicago Celiac Disease Center website says any total IgA result over 20 won't affect the celiac test.   If this is so,  I'm still confused as to what a weak positive ttg iga means even though her result was barely in this category.  Why bother having a weak positive anyway?   I just don't get it and our doc is on vacation so I won't know what he'll recommend for another week.  I'll be finding out this week if we can see a GI without a referral. Our lyme doc (she's had lyme, may still have it, like I said it's a long story) is having her do an IgG wheat test but I don't think that has any bearing on celiac does it?    
    • Hi!  I've had good luck at the Minnesota state fair because most food booths are only doing one thing so there is no cross-contamination. For example: french fries or chocolate covered bacon or Indian kebabs.   But I live in California and I am heading to the state fair today! Does anybody have any great food suggestions that are definitely gluten-free there? Thanks, Celiac C.
    • Hi.  I have been reading your post and thinking about how my pain was around diagnosis.  It was above the belly button, I think where you are describing.  At the time I assumed I had a stomach ulcer.   I had been taking Neurofen for an ear problem and assumed it was the NSAID that had caused my stomach ulcer (which I actually didn't have, when I had an endoscopy a few weeks later my stomach was looking great! My small intestine was not!).   Going back to the pain, it was a burning feeling.   My doctor prescribed Omeprazole but it didn't touch it.   In fact I ended up with bad D. which eventually lead to me having all the tests for Celiac Disease.   I still get that pain if I eat oats (pure oats) that are supposed to be OK for most Celiacs.     I get various pains in different places in my digestive tract from time to time, but that burning pain is something I won't forget. The other thing I had that you mention was that pain between the shoulder blades.  I had that - I felt almost like someone was pushing my shoulders down.  So odd. I get palpitations when I am anemic.    I hope you get some answers soon.  It is pretty tough having to keep going from one doctor to another, but sometimes it is the only way.   
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