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Desperately Sick Could This Be It?


Applegirl

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Applegirl Rookie

Hi there. I'm 28 years old and I've been sick for 7 years. I mean SICK I feel like I'm dying all the time (not to sound dramatic :unsure: ). I haven't even worked. I've had so many tests done I can't even count them i've been to over 35 doctors etc. I constantly feel SO weak, like I'm going to collapse and shakey too. My body feels like its vibrating (hard to explain) I feel tired all the time like HAVE to lay down and no matter how much I sleep it doesn't help. I get these sores on my tongue and fingers that no one can explain they just come back chronic inflammation. They've now referred me to Mayo Clinic in Jacksonville that I go to in december because I've just puzzled all the docs. I did get tested with a blood test for celiac that came back neg and when I had a scratch skin test it came back neg for wheat and yeast. I was told tho that sometimes the only way some people are diagnosed is from the biopsy. I don't get many stomach problems like pains but sometimes my poop has mucus in it. Here are a pics of my tongue and fingers..Has anyone seen anything like this or have this? Do you think this could be a gluten issue?

also wanted to add I get irregular periods (know thats a symptom) constant dizziness and when I walk I feel funny like I'm walking weird even tho everyone swears I'm not ,bad brain fog, anxiety, headaches, some times nausea, tingling in my fingers mostly, very cold feet,lips are constantly dry and cracked no matter how much balm i use

sores.webp

fingers.webp


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AzizaRivers Apprentice

I'm so sorry you're so sick. Let's look at your symptoms. Celiac can manifest itself in a lot of different ways.

*Dizziness

*Tiredness

*Geographic tongue--you have a textbook example of it (do a Google search if you're curious)

*Mucus in stool

*Nerve problems (that's the tingling and vibrating you feel)

*Brain fog

*Nausea

*Menstrual problems

*Anxiety

Sores on fingers

All of the symptoms I put a star next to are ones that are known to be highly correlated with Celiac. You will find people on here who have those same symptoms. The only thing I don't know about is the sores on your fingers. They could very well be related, I just have never seen that before.

Your negative blood test, as you seem to know, doesn't mean much. Plenty of people text negative and go on to end up having Celiac anyway. You need to bring this up at your next doctor's appointment (make one now if you don't have one coming up). If your doctor doesn't want to do a biopsy, find another doctor who will.

It's important to remind you, though, that even if you suspect Celiac (I do, from the little I know), you must continue eating a high-gluten diet until after your testing is finished. If they do a biopsy they'll be looking for villi damage, which they won't necessarily find if you stop eating gluten and your villi begin to grow back.

Applegirl Rookie

I'm so sorry you're so sick. Let's look at your symptoms. Celiac can manifest itself in a lot of different ways.

*Dizziness

*Tiredness

*Geographic tongue--you have a textbook example of it (do a Google search if you're curious)

*Mucus in stool

*Nerve problems (that's the tingling and vibrating you feel)

*Brain fog

*Nausea

*Menstrual problems

*Anxiety

Sores on fingers

All of the symptoms I put a star next to are ones that are known to be highly correlated with Celiac. You will find people on here who have those same symptoms. The only thing I don't know about is the sores on your fingers. They could very well be related, I just have never seen that before.

Your negative blood test, as you seem to know, doesn't mean much. Plenty of people text negative and go on to end up having Celiac anyway. You need to bring this up at your next doctor's appointment (make one now if you don't have one coming up). If your doctor doesn't want to do a biopsy, find another doctor who will.

It's important to remind you, though, that even if you suspect Celiac (I do, from the little I know), you must continue eating a high-gluten diet until after your testing is finished. If they do a biopsy they'll be looking for villi damage, which they won't necessarily find if you stop eating gluten and your villi begin to grow back.

Thank you for your reply. Yes I do I have a lot of qualifying symptoms. I've even recently been having a gurgly (is that even a word lol) stomach that hurts sometimes after I eat. I feel like I can barely hang on long enough to get the biopsy the muscle weakness and fatigue are so overwhelming. I was in the ER last sat and all blood came back normal, my potassium was just barely slightly low but other than that they can't find an issue with me and its so frustrating because I feel hopeless like this will be the rest of my life

rosetapper23 Explorer

Every single one of your symptoms correlates to celiac....though, of course, you may have some other autoimmune disease. However, I believe that your mouth sores may be stomatitis and the "sores" on your fingers could be Dermatitis Herpetiformis, which only people with celiac have. If you look at the list of forums on the Forum Home Page, scroll down and you'll see a forum specifically for Dermatitis Herpetiformis. There are lots of different photos there that people have posted along with their questions. DH can look different on each person, but your "sores" may very well be DH. We usually refer to them as blisters and then sores. Do they ever ooze or leak liquid at first? Do they itch? They do scab over and peel repeatedly? Do they leave purple scars behind? These tend to be pretty common symptoms of DH.

As for your cracked lips (called "cheilosis), you may be suffering from multiple nutritional deficiencies due to celiac or some other disease. Here is a link to a site that describes possible symptoms linked to nutritional deficiencies and toxicities.

Open Original Shared Link

You'll note that a deficiency in Vitamin E can cause "vibratory sense dysfunction," "gait disturbance," and "proprioception problems" (this means not understanding where you are in relationship to other things). With Vitamin B6 deficiency, you could suffer from "cheilosis," "stomatitis," and "geographic tongue." Your doctors should have certainly tested you for the more common vitamin and mineral deficiences, at the very least! You may also suffer from iron anemia or pernicious anemia (B12 deficiency). Please call your doctor immediately and request a panel of tests to determine which nutrients you are deficient in. It sounds as though you are having a serious malabsorption problem, which can certainly be brought on my celiac.

If getting the test right a way is not possible, please at least consider taking Vitamin E and a B vitamin complex as soon as possible. Neither will harm you if you're not deficient, but some of your symptoms may abate if you are able to absorb any of these vitamins at all. Alas, if you DO have celiac, you may have trouble absorbing vitamins....but do please try taking some.

I'm worried about you! Shame on your doctors for not suspecting nutritional deficiencies! And blood tests for celiac are notoriously false negative.

AVR1962 Collaborator

The tongue pic looks like you are having a reaction to something. I have family members who have these issue and theere is a whole list of fruits that have caused their issues, bananas and pears included. I have a grand daughter right now undergoing testing for what you showed in your pic, she ate a pear and this happened to her.

It sounds like you really need to try something here no matter what the tests say. Dr Oz claims 88% of all people have a gluten intolerance, more than half are not even aware. Other have different numbers but that is high regardless. Dairy intolerance, according to my gastro, is the #1 intolerance, gluten #2, high fructose #3. And there are other foods that people can have an intolerance to such as soy, and other grains.

It would be an experiment but you could try eliminating gluten and at the same time I would try taking dair out of the diet too. I know that sounds like an awful lot to take on at once but these also many times walk hand in hand. Damage to the villa in the intestines also damages other things in the body that help us digest and one of those is dairy, many times that is only temp. Do this for 2 months and see if it makes a difference.

Is your stomach a mess? Any burning? If so, you'll need to protect it by taking an acid reflux med even if you don't feel you have acid reflux and I found Pepto before eating anything I felt was acidic helped. I would personally take all acid foods out of the diet....oranges, tomatoes, lemonade, etc. You can find a low acid diet online. Wash all fresh veggies and fruits with a vinegar and water wash.....could be that pollens or pesticides could cause such a reaction as well. Salicylates which are anti-flammatory agents in fruits and veggies can cause reactions as well, that you can find also on the internet, it goes along with the low acidic diet. No soda and try to eliminate caffeine, all hard on the stomach.

Do you have trouble with latex/bandaides? I understand there is a connection with bananas and latex that can cause this type of reaction. Be very careful with your fruits right now just incase.

Lastly, I think you need to look at some supplements

At the same time I would suggest supplements. One of the things you said is that your body feels like it is vibrating, I know exactly what you mean. I felt I was on the verge of a nervous breakdown and felt like I could pass out at any time. You have described yourself as sick as I was just 7 months ago. I was barely functioning. Like you, I had so many tests ran and nothing was presenting itself. I felt I was knocking on death's door. You have described a vitamin and mineral deficiency. I did this and everything mentioned above. It was slow moving especially at first, I was in real bad shape. The answer is healing and sticking to this. It took me about 5 months to say I felt normal again, continuing all the while to improve.

Vit D- (4800 IU total daily) to help absorb calcium, irritability and dizziness or vertigo, crawling sensation on skin, joint pain, poor concentration, memory

B Complex, WSN Nerve Support Formula (4 daily) each contain thiamine- 103mg, Methyl B12- 1000 mg, B2- 2 mg, B6- 2 mg, folic acid- 100 mcg, B3- 250 IU for tingling in hands or feet, hot feet, anemia, nerve damage, buzzing in ears, neuropathy issues

Magnesium- (250 mg, 2-3 daily) for confusion and poor memory, fatigue, disturbed sleep/insomnia, irritability, muscle twitching, muscle contraction. GOOD FOOD SOURCES: legumes, tofu, nuts such as almonds and hazelnuts, brown rice, dark leafy greens

Zinc- (35 mg) supports immune system, hair loss, taste. GOOD FOOD SOURCE: meat, liver, seafood, legumes, soybeans, whole grains

Potassium- (99 mg, 1-3 daily) regulate nerve transmissions and muscle contractions, restless legs, charlie horses

Iron- (vitamin c- 60 mg, folic acid- 400 mcg, B12-8mcg, iron- 28 mg) Vitamin C in citrus fruits, berries, dark leafy veggies help absorb iron.

If you are taking any prescribed meds allow 4-6 hours before you take your supplements as there are agents in both that can bind to each other and make the prescribed meds less effective. Antacid meds should be taken before approx 30 min before a meal. All supplements should be taken with a meal to help with absortion. If you are not taking a probiotic, I definately would add that, 1-2 daily on an empty stomach.

AVR1962 Collaborator

You mentioned being dizyy and I just wanted to add that you might read about "axatia" and see if that sounds like what you are dealing with. I have it too and that has been the last symptom, along with vertigo, that I have yet to completely get rid of. I recently added copper into my diet as this is one thing that I have read can help. Right now I am taking a 2mg tab 3x daily. Also read that idebenone and vit E can help. I have actually doubled my vit E from what I mentioned above and I have some idebenone on order. I would walk leaning to my left. I would bump my shoulders into doorjams. Crouching to do work I would fall over. I have gotten alot better. Infact many times it was almost gone and then I would get glutened again and this is the big symptom for me that comes back.

Applegirl Rookie

Thank you guys for your responses. I'm glad that there are others out there who don't think I'm crazy. I feel like docs are so disinterested in what I have to say because after 7 years they just figure if other docs haven't figured it out why would they. So they give me the meds and tell me to be on my way and the meds don't work! I'm sending my hubby out to get some vitamins for me , esp the vit E and B . Anything to stop this vibrating! I was in the ER last say like I said and they said my potassium was barely low,so what do the do they prescribe me 20 days of potassium pills like its nothing. If it wasn't that low to begin with why would I need 20 days of 20mg pills?

I also have had issues with hair loss which once again could be traced to a vit.def too. I'm going a doc on tues for another blood draw and I'm going to have him check my vits. and make an appt with a GI. doc. I'm glad I'm not crazy. I will post the pics of my fingers on the DH board and see if anyone has something similar. They don't peel or anything they simply pop up then go away. They do get itchy but they hurt also sometiems so much I can't even open a bottle. They haven't left very noticable scars but I can see slight scaring. I think because of the locations its just a weird spot to see scaring. Thank you again for your help I hope I am closwer to the road of recovery! ;)


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frieze Community Regular

Thank you guys for your responses. I'm glad that there are others out there who don't think I'm crazy. I feel like docs are so disinterested in what I have to say because after 7 years they just figure if other docs haven't figured it out why would they. So they give me the meds and tell me to be on my way and the meds don't work! I'm sending my hubby out to get some vitamins for me , esp the vit E and B . Anything to stop this vibrating! I was in the ER last say like I said and they said my potassium was barely low,so what do the do they prescribe me 20 days of potassium pills like its nothing. If it wasn't that low to begin with why would I need 20 days of 20mg pills?

I also have had issues with hair loss which once again could be traced to a vit.def too. I'm going a doc on tues for another blood draw and I'm going to have him check my vits. and make an appt with a GI. doc. I'm glad I'm not crazy. I will post the pics of my fingers on the DH board and see if anyone has something similar. They don't peel or anything they simply pop up then go away. They do get itchy but they hurt also sometiems so much I can't even open a bottle. They haven't left very noticable scars but I can see slight scaring. I think because of the locations its just a weird spot to see scaring. Thank you again for your help I hope I am closwer to the road of recovery! ;)

the potassium is actually 20 mEq per tab/cap. don't know what that equals in mg. They were addressing the only problem they could dx. perhaps you need kidney function checked.

Applegirl Rookie

the potassium is actually 20 mEq per tab/cap. don't know what that equals in mg. They were addressing the only problem they could dx. perhaps you need kidney function checked.

I thank you I forgot to mention I had mouth surgery for a tooth 3 weeks ago and for about a week and a half after that I couldn't hardly eat anything at all so I think thats where the low potassium came from. I forgot to mention that :blink: but these other issues have been going on for years and years

pricklypear1971 Community Regular

I thank you I forgot to mention I had mouth surgery for a tooth 3 weeks ago and for about a week and a half after that I couldn't hardly eat anything at all so I think thats where the low potassium came from. I forgot to mention that :blink: but these other issues have been going on for years and years

By chance did your rash get worse after surgery? Did the

dentist use iodine packing?

If yes to both that may be a great indicator of DH. As a matter of fact there's a case study about that exact thing.

Applegirl Rookie

By chance did your rash get worse after surgery? Did the

dentist use iodine packing?

If yes to both that may be a great indicator of DH. As a matter of fact there's a case study about that exact thing.

no i can't say it got worse, a few more popped but not directly after. I'm not sure if he used iodine packing but I go back in a week and I will def ask him!

AVR1962 Collaborator

Thank you guys for your responses. I'm glad that there are others out there who don't think I'm crazy. I feel like docs are so disinterested in what I have to say because after 7 years they just figure if other docs haven't figured it out why would they. So they give me the meds and tell me to be on my way and the meds don't work! I'm sending my hubby out to get some vitamins for me , esp the vit E and B . Anything to stop this vibrating! I was in the ER last say like I said and they said my potassium was barely low,so what do the do they prescribe me 20 days of potassium pills like its nothing. If it wasn't that low to begin with why would I need 20 days of 20mg pills?

I also have had issues with hair loss which once again could be traced to a vit.def too. I'm going a doc on tues for another blood draw and I'm going to have him check my vits. and make an appt with a GI. doc. I'm glad I'm not crazy. I will post the pics of my fingers on the DH board and see if anyone has something similar. They don't peel or anything they simply pop up then go away. They do get itchy but they hurt also sometiems so much I can't even open a bottle. They haven't left very noticable scars but I can see slight scaring. I think because of the locations its just a weird spot to see scaring. Thank you again for your help I hope I am closwer to the road of recovery! ;)

Add some bananas into your diet and some zinc, good for your hair which you can get thru skins in potatoes if you don't wan tot take the supplement. You mentioned these bumps came and went and I had a lightbulb moment.....I had the same thing on my back. They itched, I thought they were moles. Went to GP and was told to set up with derm doc but by the time I got my appt they were gone. However, they have not returned being on a gluten-free diet. I hope it works the ame for you!

Lori2 Contributor

I'm going a doc on tues for another blood draw and I'm going to have him check my vits. and make an appt with a GI. doc. I'm glad I'm not crazy.

Also remember that even if your blood levels are normal doesn't necessarily mean that your tissue levels are adequate. Your body will draw nutrients from elsewhere (bone, muscle, tissue) to keep your blood levels at the required level.

rosetapper23 Explorer

I'm so glad that you're going to start taking the supplements! You should start feeling better soon if your malabsorption isn't too bad.

Regarding the sores on your fingers, DH does both itch and hurt. That's where the "herpetiformis" part of its name comes from--it is herpes-like (though, not related to herpes) in that it is painful the way herpes lesions are. My son gets DH so badly on his fingers, he isn't able to work due to the pain--he can barely pick anything up.

You're headed in the right direction--just get those vitamins and minerals tests (particularly E, B6, B12, D, zinc, magnesium, calcium, and iron)....and visit a gastroenterologist, and you may be back on track for a wonderful life soon.

Please stay with us and let us know how things turn out, okay?

Applegirl Rookie

The tongue pic looks like you are having a reaction to something. I have family members who have these issue and theere is a whole list of fruits that have caused their issues, bananas and pears included. I have a grand daughter right now undergoing testing for what you showed in your pic, she ate a pear and this happened to her.

It sounds like you really need to try something here no matter what the tests say. Dr Oz claims 88% of all people have a gluten intolerance, more than half are not even aware. Other have different numbers but that is high regardless. Dairy intolerance, according to my gastro, is the #1 intolerance, gluten #2, high fructose #3. And there are other foods that people can have an intolerance to such as soy, and other grains.

It would be an experiment but you could try eliminating gluten and at the same time I would try taking dair out of the diet too. I know that sounds like an awful lot to take on at once but these also many times walk hand in hand. Damage to the villa in the intestines also damages other things in the body that help us digest and one of those is dairy, many times that is only temp. Do this for 2 months and see if it makes a difference.

Is your stomach a mess? Any burning? If so, you'll need to protect it by taking an acid reflux med even if you don't feel you have acid reflux and I found Pepto before eating anything I felt was acidic helped. I would personally take all acid foods out of the diet....oranges, tomatoes, lemonade, etc. You can find a low acid diet online. Wash all fresh veggies and fruits with a vinegar and water wash.....could be that pollens or pesticides could cause such a reaction as well. Salicylates which are anti-flammatory agents in fruits and veggies can cause reactions as well, that you can find also on the internet, it goes along with the low acidic diet. No soda and try to eliminate caffeine, all hard on the stomach.

Do you have trouble with latex/bandaides? I understand there is a connection with bananas and latex that can cause this type of reaction. Be very careful with your fruits right now just incase.

Lastly, I think you need to look at some supplements

At the same time I would suggest supplements. One of the things you said is that your body feels like it is vibrating, I know exactly what you mean. I felt I was on the verge of a nervous breakdown and felt like I could pass out at any time. You have described yourself as sick as I was just 7 months ago. I was barely functioning. Like you, I had so many tests ran and nothing was presenting itself. I felt I was knocking on death's door. You have described a vitamin and mineral deficiency. I did this and everything mentioned above. It was slow moving especially at first, I was in real bad shape. The answer is healing and sticking to this. It took me about 5 months to say I felt normal again, continuing all the while to improve.

Vit D- (4800 IU total daily) to help absorb calcium, irritability and dizziness or vertigo, crawling sensation on skin, joint pain, poor concentration, memory

B Complex, WSN Nerve Support Formula (4 daily) each contain thiamine- 103mg, Methyl B12- 1000 mg, B2- 2 mg, B6- 2 mg, folic acid- 100 mcg, B3- 250 IU for tingling in hands or feet, hot feet, anemia, nerve damage, buzzing in ears, neuropathy issues

Magnesium- (250 mg, 2-3 daily) for confusion and poor memory, fatigue, disturbed sleep/insomnia, irritability, muscle twitching, muscle contraction. GOOD FOOD SOURCES: legumes, tofu, nuts such as almonds and hazelnuts, brown rice, dark leafy greens

Zinc- (35 mg) supports immune system, hair loss, taste. GOOD FOOD SOURCE: meat, liver, seafood, legumes, soybeans, whole grains

Potassium- (99 mg, 1-3 daily) regulate nerve transmissions and muscle contractions, restless legs, charlie horses

Iron- (vitamin c- 60 mg, folic acid- 400 mcg, B12-8mcg, iron- 28 mg) Vitamin C in citrus fruits, berries, dark leafy veggies help absorb iron.

If you are taking any prescribed meds allow 4-6 hours before you take your supplements as there are agents in both that can bind to each other and make the prescribed meds less effective. Antacid meds should be taken before approx 30 min before a meal. All supplements should be taken with a meal to help with absortion. If you are not taking a probiotic, I definately would add that, 1-2 daily on an empty stomach.

do u take all those daily?

i was thinking of starting with a vit. e , zinc and vit b complex

Applegirl Rookie

I'm so glad that you're going to start taking the supplements! You should start feeling better soon if your malabsorption isn't too bad.

Regarding the sores on your fingers, DH does both itch and hurt. That's where the "herpetiformis" part of its name comes from--it is herpes-like (though, not related to herpes) in that it is painful the way herpes lesions are. My son gets DH so badly on his fingers, he isn't able to work due to the pain--he can barely pick anything up.

You're headed in the right direction--just get those vitamins and minerals tests (particularly E, B6, B12, D, zinc, magnesium, calcium, and iron)....and visit a gastroenterologist, and you may be back on track for a wonderful life soon.

Please stay with us and let us know how things turn out, okay?

thank you we posted at the same time reguarding supplements lol

AVR1962 Collaborator

do u take all those daily?

i was thinking of starting with a vit. e , zinc and vit b complex

Yes, and they have been okayed by my doc. The vits you mentioned are a good start. And I have to apologize, I mentioned potato skins for more zinc intake, got my minerals mixed up. They have copper in them Open Original Shared Link Great food source as they also have magnesium, vit c, potassium and B6 which are all vits your body is probably really needing right now.

If you feel you have ataxia I would encourage copper and magnesium supplements as well. Here is a quote from an article on the subject of ataxia (dizzy/off balance): "Approximately 80% of the people who suffer from autoimmune diseases are women. The most important nutrient that women need more of than men is copper. Any nutritional detective who is trying to find the culprit in autoimmune diseases should first suspect copper." The article is long but it was saying that magnesium and copper can help with ataxia. Have only found one site that gave an amount of copper to consume which was 3 mg a day. Open Original Shared Link

Your calcium and vitamin d intake are equally important. Make sure that you look at the ingredients on your vits as some use wheat as a binder. Take your vits with a meal and divide them up in your day if you are taking enough of one that requires more than one tab of each. Experiment with it, do some research. It will be interesting to know how you do, I wish you the best. I think you will find a big difference in one month on a gluten-free, dairy free diet with supplements.

I too did not have a diagnosis when I first started into my gluten-free diet, and it was not something that my doc had suggested.....he was still lining up tests and sending me to specialists which was good in the long run as they eliminated lots of things and in the process iit did show I had bone loss which added later to my diagnosis. But because this suggestion did not come from a doc, I was thinking, "Really? is this it?" and I did way too much experimenting to see 'how much' I could get away with. That slowed down my recovery. I would not ask that question. Be strict with your diet and I think you'll see a difference in no time!

About the antacid doc suggested not helping your stomach, you may have to increase the amount. I was on a prescribed med and it also was not helping me, doc told me to double it, and I was doing 2 doses of Pepto in between for awhile. Slowly I was able to back off all of it.

Applegirl Rookie

Thanks for all the tips. I've started gluten free since the first post but I'm all itchy now! No rash just itchy .. Is this one of those it has to get worse before it gets better, like the toxins are leaving my system? Anyone experience this?

AVR1962 Collaborator

Thanks for all the tips. I've started gluten free since the first post but I'm all itchy now! No rash just itchy .. Is this one of those it has to get worse before it gets better, like the toxins are leaving my system? Anyone experience this?

Several things can make you itch and you will have to look at various things to figure it out. Take a look at 'high salicylate' foods. If this is what you are eatng, eliminate it for now. Caesins (dairy protein) can cause itching/hives. Look at your detergent, some scented detergents & fabric softeners cause problems. Check you lotion, they can also cause itching. It's not that these items are getting in your body, they cause irritation to the skin.

You mentioned a recent surgery on a tooth. I wonder if something that was used in surgery caused the irritation to the tongue.....did that occur right afterwards?

GFinDC Veteran

Some people find sub-lingual (dissolves under the tongue) vitamins helpful at first. The most common one to find is sub-lingual Vit B-12. The thinking being that sub-lingual vitamins can be absorbed in the mouth rather than the intestine, which may be damaged and not able to absorb them. Watch out for the super-mega kitchen-sink multi-vitamins as they may have things in them that may cause problems. It is better to take pills with fewer ingredients so you can identify possible problem ingredients. So, a D, Mag, Zinc would be better than a D, Mag, Zinc and the neighbors chemical factory refuse list combo. Er, make that better than a multi-vitamin. And get the mostly same brand of vitamins once you identify a good source that is gluten-free. I'd look for soy-free also as some of us have problems with soy too.

GeoTongueHealed Newbie

Hello Applegirl - in short You might have fructose malabsorption - google it, check it, try diet for couple weeks

I had the same problem with my tongue. After years of struggle I found solution.

For 15 years it was constantly inflamed, my doc diagnosed my condition as geographic tongue and said its nothing to worry about...But i thought that ongoing soreness in mouth IS something to worry about so than i visited 5 other docs - they prescribed B vitamins, nystatin for fungus infections, inflammation drugs etc. with no success.

I became commited to finding a solution - went on gluten free diet, dairy free diet, raw food diet, low carb diet, i took tons of suplements, tried various toothpastes - with no result ;/

I was frustrated but then after 15 years i got breakthrough - when accidently my tongue was mostly clear i become superconscious to find anything that aggravates my condition, noted everything I ate - 48 hours after ingestion of lots of fruit from my friends garden - mostly pears and apples - my tongue got RED SWOLLEN AND INFLAMED, my lips swollen and cracked... Bloating, gas, stomache...

My theory:

FRUCTOSE MALABSORPTION --> BACTERIA OVERGROWTH --> INFLAMED GUT --> NUTRIENT MALABSORPTION ( mainly iron, zinc, folate) and INFLAMED TONGUE

Now im fructose free, my tongue is clear, i have normal regular stools and verything seems ok.

You might want to try this, but of course consult it with your doc.

sorry for my english - it isn't my mothers tongue.

anna34 Enthusiast

Sorry you've been feeling sick for so long. Many of your symptoms resonate with me. For what it's worth, my dizziness, brain fog, tingling, nausea, and extreme tiredness have all cleared up since going gluten-free 6 months ago. Good luck with your recovery.

Applegirl Rookie

Sorry you've been feeling sick for so long. Many of your symptoms resonate with me. For what it's worth, my dizziness, brain fog, tingling, nausea, and extreme tiredness have all cleared up since going gluten-free 6 months ago. Good luck with your recovery.

thank you I've been gluten free only 5 days and my dizziness is completely gone as is the "sick feeling" .. At the time I wrote the post I had just graduated Culinary school and I wonder if being in there 5 days a week for 6 hours was poisoning my body with gluten overload. Breathing it in, handling it etc. Here's my sores now..

Last week

sores.webp

day 5

day5.webp

I still have some but I know this isn't an overnight fix all and this is gonna take a while to rectify itself. I'm still paying attention to things I could still be allergic to or that aggrivate symptoms :)

rosetapper23 Explorer

I think you may have found your answer--gluten is no good for you.

I'm so glad to see an improvement in your symptoms! Yay for you!

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    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
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