Celiac And Vulvodynia And Vaginal Issues

[fiore]

Hi Everyone,

I am new here. My name is Fiore. My celiac diagnosis has not yet been confirmed but my doc (the latest of a long series) is pretty confident. I would like to know if anyone has had an experience similar to mine and has any suggestions. I saw that there are some similar posts but they are old so I'm bringin this up again.

Briefly, this is my story: I am 49. I have been always very healthy until about 3 years ago, when I started having incredible pain during periods and bleeding between them. After various useless treatments, I underwent an hysterectomy. It was a particularly complex one (I spare you details) but I kept an ovary. The surgery went well. About 2 months after, however, I started experiencing burning at the entrance of my vagina. It has been a down spiral since then. I have seen an army of doctors and specialists (OBGY, dermatologist, neurologist, physical therapists, etc). There is nothing wrong with me. NOTHING.

Except that for more than 2 years I have had this permanent feeling of irritation/burning at the left-side entrance of my vagina that becomes intolerable with pressure and, in particular, friction. The low level burning is permanent and fleurups caused my minor events may last months. Result: I can't have intercorse, I can't wear pants or tight skirts (forget about jeans), I can't bike or run, etc.

The physical and emotional toll so far has been enormous but I am trying to stay up.

Has anyone else had a similar experience/symptoms? I have gone gluten free (or at least I am trying) for a week. No change so far. How long before seeing some results?

I will appreciate any help. Thank you for listening.

I wish good health to all,

Fiore

[April in KC]

Hi Fiore -

I have read that a low-oxalate diet may help some women with vulvodynia. If you haven't already given this diet a try, you might scan the "high oxalate" foods on this list and avoid them:

Open Original Shared Link

(Please note that this list does not show a distinction between gluten free and non-gluten free foods.)

I'd also encourage you to stay gluten free for at least a month or two...if you're up to it, try low oxalate and gluten free at the same time.

Best of luck to you - I'm sorry you have had to endure what you have. Hopefully you get some relief from your pain. I had pelvic pain for years (not vulvodynia) - it is much better now that I am gluten free. I hope you find your answers.

April

[Kim Hopkins]

Hi Fiore,

I had the same problem. My naturopathic doctor tried lots of ideas (switching to Dreft laundry detergent, using all green cleaning products...) but nothing helped. She told me to do some research and I came across the book "The Yeast Connection & Women" by Dr. William Crook. I literally cried when I read it b/c it described so many of my symptoms, including volvodynia. Because of having Celiac Disease (although it had been under control for many years), I had "leaky gut" syndrome, leaving me susceptible to candida/yeast. Once I did the candida elimination diet, I felt so much better (this is close to the low oxcilate diet, which I have also heard is helpful). Removing foods that feed yeast (like sugar, vinegar, moldy foods like mushrooms, peanuts, tree nuts...) got me on the road to good health. I then went the next step to figure out hidden food sensitivities. It's been quite a process, but totally worth it.

I totally feel for the emotional part of your struggle, and I hope you find answers soon.

[tarnalberry]

I have vulvar vestibulitis myself. I tried the low oxalate diet (didn't help), and yeast may have been involved, but I do not think that was it. I was fortunate not to get the doctor run around (ditch a doctor who tells you that the vulvar burning is nothing), but it still took about a year to get in with a specialist. A year of PT after that, three years of working with a sex counselor (no, it's not a psychological problem, but if touching a hot stove is painful, you learn not to touch a hot stove, only learning not to ever have sex is not so useful for a good marriage ), and a lot of time and tears, and I'm doing reasonably well with maintenance. (This is the VERY short version.) I actually found my gluten intolerance from someone on a yahoo group who insisted that vestibulitis had to be caused by food intolerances. (My recourse was topical estrogen to rebuild collagen in the vulvar tissue, atarax to reduce histamine buildup that degrades collage, and frequent, long-term PT.)

You aren't alone - I wore nothing but skirts for three years. Still don't wear jeans, and I doubt I will ever ride a real bike. (I have a recumbent.) But it *can* get better. There are specialists in many parts of the country, and consider traveling (I still see the doc I saw in california - and I currently live in washington) to see one.

[fiore]

Hi Ladies,

Thank you for replying.

Unfortunately, I tried aleady done pretty much everything you suggested.

Low oxalate diet does not work for me. Yest does not seem to be the problem. I have done PT, does not help. Actually makes irritation worst. I don't have any pelvic floor issues in terms of muscle. I did feedback too and showed I am fine.

The leaking gut syndrome is a possibility, haven't gone through that one yet. My problems started after the surgery so it may be possible.

Concernig doctors, I live in NYC, some of the top specialists are here and I have seen them all. I have been also to Michigan and Boston. They tried various things and they all made me worst.

I am discouraged. I don't know what else to do.

Thank you all for replying.

Best,

Fiore

[tarnalberry]

Hi Ladies,

Thank you for replying.

Unfortunately, I tried aleady done pretty much everything you suggested.

Low oxalate diet does not work for me. Yest does not seem to be the problem. I have done PT, does not help. Actually makes irritation worst. I don't have any pelvic floor issues in terms of muscle. I did feedback too and showed I am fine.

The leaking gut syndrome is a possibility, haven't gone through that one yet. My problems started after the surgery so it may be possible.

Concernig doctors, I live in NYC, some of the top specialists are here and I have seen them all. I have been also to Michigan and Boston. They tried various things and they all made me worst.

I am discouraged. I don't know what else to do.

Thank you all for replying.

Best,

Fiore

Do check out the available support groups for other ideas. It seems like there are sub-types, difficult to distinguish from one another, that need different forms of treatment. Some people do well with lidocaine, I know, and it makes others worse. Some people found success with tri-cyclics, others got nothing but side effects. Some people find that identifying their food triggers helps, some never can identify food triggers that make a difference. Some find that it's an extreme chemical sensitivity, some aren't bothered. Some people do great after healing from a vestibulectomy, others find it doesn't help that much. (Though, obviously, that last one is a 'last resort' type of thing.) And even trickier is finding the *right combination* of things that works. (Topical estrogen and PT didn't help until I added antihistamines, for instance. And I didn't see really improvement over that until I started having sex regularly again. I know that sounds weird, but is also apparently not uncommon. I had to get things to calm down enough that sex was possible, then if my husband and I are lazy about it for a couple weeks, it starts getting a bit worse. My docs and I both think the likely key is orgasm, and the chemical released in the body that follows it.)

About the only thing I see in common on the support groups I've been on is that it usually does take a number of years (3, 4, 5 years at least) before finding something that works and having it work.

Keep looking for help. There are more ideas on ways to treat this (not cure, just treat), than there are doctors who treat it. Don't give up!

[tinyshinythings]

This vaginal/gut link is a really interesting thread and a real ahah! moment for me. I have been telling my doc I was SURE there was a link and he poohpoohed it. I'm not Gluten-Free yet and it makes everything swell for me (swell as in become engorged not the good swell!) As soon as my gut kicks off, so do my lady bits! So looking forward to the Gluten-Free experiement to see if I'm right.

[Watercolor]

Hi Fiore,

I am sorry you are going through this. It sounds horrible.

Well, if the obvious things have been ruled out, it's time to look at the not so obvious.

Did the symptoms start after the hysterectomy? Was it a vaginal hysterectomy? There's always a possibility of nerve damage from surgery, and your symptoms sound like it could be nerve damage.

Especially since you mentioned it was a difficult surgery.

I would suggest you see your doctor and ask if you can start a course of Neurontin (gabapentin). It is used to treat all sorts of nerve pain. It may take increasing the dose several times before you see any effect, but it's worth hanging in there. I hope this helps.

[fiore]

Hi Fiore,

I am sorry you are going through this. It sounds horrible.

Well, if the obvious things have been ruled out, it's time to look at the not so obvious.

Did the symptoms start after the hysterectomy? Was it a vaginal hysterectomy? There's always a possibility of nerve damage from surgery, and your symptoms sound like it could be nerve damage.

Especially since you mentioned it was a difficult surgery.

I would suggest you see your doctor and ask if you can start a course of Neurontin (gabapentin). It is used to treat all sorts of nerve pain. It may take increasing the dose several times before you see any effect, but it's worth hanging in there. I hope this helps.

Hi,

Thank you for your reply. The surgery was not vaginal. I have a huge vertical cut from my belly botton all the way down. They needed access so that is the way to do it. Untoftunately, it is also the most invasive. Nerve dammage is likely. In fact I have been on Elavil for now one and a half year. Elavil is very similar to Neurontin which would have been the second drug to try in case Elavil did not work. Elavil does reduce the burning very significantly. However, does nothing for the irritation. In other words, even if I am burning free, I still can't wear pant or have intercourse because the friction brings the burning back inspite of Elavil. I guess I could up the dosage but I can hardly tolerate what I am taking. I need to find a way to reduce the inflamation but i don't know how. If I could do that, I am very confident that the regimen described by someone in anearly post (teraphy, antihistamin, etc.) would help.

Thank you all for listening

Fiore

[fiore]

Do check out the available support groups for other ideas. It seems like there are sub-types, difficult to distinguish from one another, that need different forms of treatment. Some people do well with lidocaine, I know, and it makes others worse. Some people found success with tri-cyclics, others got nothing but side effects. Some people find that identifying their food triggers helps, some never can identify food triggers that make a difference. Some find that it's an extreme chemical sensitivity, some aren't bothered. Some people do great after healing from a vestibulectomy, others find it doesn't help that much. (Though, obviously, that last one is a 'last resort' type of thing.) And even trickier is finding the *right combination* of things that works. (Topical estrogen and PT didn't help until I added antihistamines, for instance. And I didn't see really improvement over that until I started having sex regularly again. I know that sounds weird, but is also apparently not uncommon. I had to get things to calm down enough that sex was possible, then if my husband and I are lazy about it for a couple weeks, it starts getting a bit worse. My docs and I both think the likely key is orgasm, and the chemical released in the body that follows it.)

About the only thing I see in common on the support groups I've been on is that it usually does take a number of years (3, 4, 5 years at least) before finding something that works and having it work.

Keep looking for help. There are more ideas on ways to treat this (not cure, just treat), than there are doctors who treat it. Don't give up!

Hello,

How did you get things to calm down enough that sex was possible? What do you use as estrogen (estrace?) and as antihistamine? Could you tolerate PT? I hope you don't mind me asking. I don't mean to be intrusive. I am just trying to figure out a combination that works for me. The feedback machine read that I have no pelvic muscle problems. Yet, I think the teraphy was helping a little. The problem is that after 3 sessions I am so irritated that the PT could not touch me. I am using olive oil at night but it doesn't seem to help much.

Take care,

Fiore

[tarnalberry]

Hello,

How did you get things to calm down enough that sex was possible? What do you use as estrogen (estrace?) and as antihistamine? Could you tolerate PT? I hope you don't mind me asking. I don't mean to be intrusive. I am just trying to figure out a combination that works for me. The feedback machine read that I have no pelvic muscle problems. Yet, I think the teraphy was helping a little. The problem is that after 3 sessions I am so irritated that the PT could not touch me. I am using olive oil at night but it doesn't seem to help much.

Take care,

Fiore

No worries about 'intrusive'. I'd rather talk openly about this to encourage women to not keep silent.

I used topical estrogen (just on the vulva) every day for ... oh, months. A couple times a week as maintenance after that. It was estrace, but I know some women are bothered by the propylene glycol in it, and have to have in specially compounded. (Compounding pharmacies can do this, and ship it to you.) The purpose of the topical estrogen is to rebuild collagen in the vulvar tissues, to 'plump' them up so that nerve endings are not as close to the surface of the skin. I used atarax as an antihistamine - made me sleepy, but there are things you'll trade for such side effects. The purpose of the antihistamine is to reduce histamine build up caused by pressure, and by irritation, as histamine can play a role in degrading the collagen in the tissues. For a time, when things were quite dry and easily irritated, I used Replens (OTC vaginal moisturizer). I know it's 'detailed', but there was a lot of dead skin to slough off and get rebuilt. It took about four months for that. And the PT machine showed a couple of things - 1) I had high resting levels of tension. Not hugely high, but high for me. It's worth finding a PT who will work with you for a while. 2) The muscles were *tight* and we did internal massage. It was *not* fun, but it helped. Always ice and e-stim to end PT - sometimes ice at home. I only did PT twice a week, however, because we didn't want to over-irritate things, and if it was particularly flare-y, no internal work. I showed *no objectively measurable progress* for at least two months. Only stubbornness kept me going. After that, progress was SLOW.

Let me know if I forgot to answer anything... It's been a while since I've been doing anything other than maintenance.

[Roda]

Hi,

Thank you for your reply. The surgery was not vaginal. I have a huge vertical cut from my belly botton all the way down. They needed access so that is the way to do it. Untoftunately, it is also the most invasive. Nerve dammage is likely. In fact I have been on Elavil for now one and a half year. Elavil is very similar to Neurontin which would have been the second drug to try in case Elavil did not work. Elavil does reduce the burning very significantly. However, does nothing for the irritation. In other words, even if I am burning free, I still can't wear pant or have intercourse because the friction brings the burning back inspite of Elavil. I guess I could up the dosage but I can hardly tolerate what I am taking. I need to find a way to reduce the inflamation but i don't know how. If I could do that, I am very confident that the regimen described by someone in anearly post (teraphy, antihistamin, etc.) would help.

Thank you all for listening

Fiore

My husband has post surgical pain from a vasectomy that resulted in a massive scrotal hematoma. They believe him to have nerve damage also. He takes Elvil (amitriptyline) and neurontin both. I don't think either dose is very high, but the neurontin does help. He had the flu recently and could not keep anything down. After, since he had not taken it while sick, he decided to go off it to see if it really helped. It does and he started it back. It does help his pelvic pain. I know this is slightly off subject, but he has had some sucess with being on both. You can check out the thread if you want under the forum about anything but celiac. Just look for the topic with my user name.

[tarnalberry]

fiore, re-reading one of your posts, about thinking other things might help if you could reduce the inflammation, makes me suspect that trying an antihistamine *would reduce the inflammation*. Histamine production is almost always a part of the inflammatory process, and it can get trapped in a cycle of constant production. You might give it a try for two or three months (in combination with everything your doing now), to see if you notice *any* difference.

(I should note, however, that my allergist strongly suspects that my specialist had me using atarax for it's anticholinergic properties, and not something OTC like claritin, which does not have this property. (I've never asked my specialist about this specifically, but my old allergist picks up on these things quite well.) Zyrtec is a metabolite of atarax and available OTC, but shows very little anticholinergic activity. Most people don't want the affect on nerve transmission from an antihistamine dealing with their daily allergies, but we want it for our purposes! Fortunately, atarax is an old generic, and quite cheap, though it does still require a prescription.)

[fiore]

fiore, re-reading one of your posts, about thinking other things might help if you could reduce the inflammation, makes me suspect that trying an antihistamine *would reduce the inflammation*. Histamine production is almost always a part of the inflammatory process, and it can get trapped in a cycle of constant production. You might give it a try for two or three months (in combination with everything your doing now), to see if you notice *any* difference.

(I should note, however, that my allergist strongly suspects that my specialist had me using atarax for it's anticholinergic properties, and not something OTC like claritin, which does not have this property. (I've never asked my specialist about this specifically, but my old allergist picks up on these things quite well.) Zyrtec is a metabolite of atarax and available OTC, but shows very little anticholinergic activity. Most people don't want the affect on nerve transmission from an antihistamine dealing with their daily allergies, but we want it for our purposes! Fortunately, atarax is an old generic, and quite cheap, though it does still require a prescription.)

Hi,

Thank you very much for the information. It really helps.

In many ways it seems I am following a pattern similar to yours. One difference is that while you had some pelvic muscle problems, I don't. My resting rates are as normal as they can be (I am not sure whether I should be happy or not). I found a good PT and she thinks she could do some internal stretching but the irritation is so strong that I can't tolerate it.

The second difference is that my OBGY, as well as all the specialists I saw, said I did not need estrogen but I am not sure. Among other things, I think I may be starting menopause. Early on I did try Estrace and Vagifem and they both bothered me. I think if I can reduce the irritation things may be different.

At this point my main problem is to find a way to reduce the irritation/inflamation. Elavil helps me to living with it, but it does not cure anything. I have been gluten free for now about 3 weeks. I have lost a couple of pounds and I feel better in general (Good!). However, no improvement "down there" at all. Not yet at least.

The antihistamine sounds like a thing to try. I did some research and I made an appointment with my doc, I want him to give me atarax. How many mg do you take?

Let me know if you can think of anything else.

Once again, thank you.

Fiore

[tarnalberry]

due to the drowsiness it causes, I started with 10mg/day, and worked up to... 50mg/day at my highest doseage. maintenance is more like 20mg/day, and that was only for months I need it.

[fiore]

due to the drowsiness it causes, I started with 10mg/day, and worked up to... 50mg/day at my highest doseage. maintenance is more like 20mg/day, and that was only for months I need it.

I am back from the doctor and I am holding a jar of atarax. I am going to start tonight with 10mg and work it up as needed. My doc is a bit skeptical but happy to try. I will go off Elavil, I was taking very little doses of it anyway (10mg). It helps me to know that it's there and I can go back to it if I get a bad episode. No PT and estrace yet, at least until the irritation abates. We'll see what happens... I'll keep you posted. Thank you for the help you have given me. If I get better we'll celebrate. I am not sure how but we'll find a way!

Best,

Fiore

[tarnalberry]

I can't emphasize enough how the antihistamine was only *part* of the process.

If the antihistamine helps reduce the histamine in the skin, you still need something (like a topical estrogen of some variety, even if compounded specifically for you) to help rebuild collagen in the tissues, and you still need to make sure to reduce the creation of new histamine as much as possible (avoiding excess pressure and allergens be it via food or environmental).

It's soooo natural to want to find *the thing* that will work, rather than the special alchemy that will be your special blend. But it doesn't work that way.

I do very much hope, however, that you start to see improvement on the meds, and that they do make some difference, some base for you to continue working from.

[fiore]

I can't emphasize enough how the antihistamine was only *part* of the process.

If the antihistamine helps reduce the histamine in the skin, you still need something (like a topical estrogen of some variety, even if compounded specifically for you) to help rebuild collagen in the tissues, and you still need to make sure to reduce the creation of new histamine as much as possible (avoiding excess pressure and allergens be it via food or environmental).

It's soooo natural to want to find *the thing* that will work, rather than the special alchemy that will be your special blend. But it doesn't work that way.

I do very much hope, however, that you start to see improvement on the meds, and that they do make some difference, some base for you to continue working from.

Hello,

Thanks for the post. I know well that, unfortunately, antihistamine is only one piece of the puzzle (if at all). I am just substituing it for Elavil. If it works as well as Elavil but in addition helps a bit with the inflamation, that will be good news and may allow me to move on to the next step.

I took 10mg yesterday and did not make me sleepy. At least no more than Elavil did.

One question on a different topic: Did you have VV first and then found out you were Celiac or the reverse?

I promise I won't bug you again. I will take my meds for a while and see what happens (if anything) in a couple of months.

Cheers,

Fiore

[tarnalberry]

Hello,

Thanks for the post. I know well that, unfortunately, antihistamine is only one piece of the puzzle (if at all). I am just substituing it for Elavil. If it works as well as Elavil but in addition helps a bit with the inflamation, that will be good news and may allow me to move on to the next step.

I took 10mg yesterday and did not make me sleepy. At least no more than Elavil did.

One question on a different topic: Did you have VV first and then found out you were Celiac or the reverse?

I promise I won't bug you again. I will take my meds for a while and see what happens (if anything) in a couple of months.

Cheers,

Fiore

Don't worry about bugging me at all!

It's so hard to do this sort of thing over posts.

I found out I was Celiac after I developed VVS. I was on a Yahoo Group (either Open Original Shared Link or one that isn't on Yahoo anymore in any similar manifestation to what it was at the time), and there was a woman on there who was quite insistent that none of us had VVS, but we all had some food allergy or intolerance, most likely Celiac disease. *QUITE INSISTENT* Honestly, she really rubbed me the wrong way. She ignored just about everything I said, and stuck to "if you just stopped arguing and went gluten free, you'd be pain free", in a less than pleasant fashion, as far as I could read over an internet post, anyway.

So I tried the gluten free diet, on my own, at home, after a whole metric-crap-ton of research, to prove a random stranger over the internet wrong. The things you won't do that offer a glimmer of hope (even if just to disprove that glimmer of hope!) to get past that damn pain! Didn't do a thing for my vulvar pain, but I learned that those strange intestinal noises (bourbourygmi) were not normal, that I had been bloated... probably all my life (not hugely, but definitely some), and that stool is usually more consistent than mine was - not to mention a couple other random things. (Of course, she was sure I was cheating, since my vulvar pain didn't go away. The 'conversation' got heated, and personal. After three years of being a daily member of that group, I left, and haven't returned.) Two weeks after starting the diet, my doc did blood work to find inconclusive levels while on the gluten-free diet, didn't press me to do a lengthy challenge or biopsy but rather to go by the circumstantial evidence. I did a one-day, massive gluten challenge, felt like crap, and said "there's my evidence, empiric though it may be; I'm at least gluten-intolerant, and now, I'm gluten free".

Eliminating any one thing never really made a big change in my vulvar pain. I think eliminating dairy helped a bit, but mostly because dairy is fairly binding for me, and then things in the whole lower torso get 'tense' and that added pressure creates more histamine and it just gets irritated. And a crappy, random, eat whatevertheheck diet doesn't help. But that's my "princess and the pea" body. (My PT, chiro, hubby, etc., and I all get a good laugh out of it. Mine is a sighing laugh. )

[frogrun]

I know this post is a little old, but I thought I would through out my two-cents. I was diagnosed with VV in 2000. I tried everything with only mild relief for short periods of time. Recently my Husband and I started using Natural Family Planning to help improve our spiritual life

[BRS-07]

So I've been having similar burning problems starting about the time I found out I was celiac which was in April. I'm on my 5th doctor and she is a very stumped specialist who is trying to help, but can't figure out what is wrong. Are you guys saying that it is possible that this could be a reaction from a food that my body is now sensitive to? If so, how do you cut out sugar/fruit with being celiac....will you still be able to get the nutrients you need from those fruits and keep your diet balanced with taking that out to test the yeast theory?

[PrincessHungry]

LADIES!!!!! OMG you have no idea how happy I am to find this thread! Where should I start?

I was diagnosed with celiac 8/09 and had a fibroid removed from my uterus (through my belly button) in 9/09. Two months after surgery, I was standing in the kitchen drinking OJ when I immediately felt like I had shards of glass in my urethra. I'd never been aware of my urethra or what it even did but let me tell you, I was FULLY aware after that. The pain was awful. Anyone I told, told me I was crazy.

Then I started getting UTI like symptoms. I was a UTI pro (lots of UTIs/yeast infection issues pre-diagnosis) so I knew something was up. I went back to my gyno 4 or 5 times and every test was negative. Finally I started looking online for celiac related issues and found interstitial cystitis. I was referred to a fancy urogyno who acted like I was an idiot for thinking that and diagnosed me with vulvodynia. I started PT and imipramine (up to 40mg, 50 was too much) and *on my own* started the low oxalate diet.

I kept trying to explain to doctors that FOOD was causing these problems and no one believed me. When I ate citrus, I was in terrible pain. Specific preservatives made my lady parts hurt. Sometimes it was immediate, sometimes within a few hours. When I eat white potatoes, I get a funky discharge (yup, we all just became best friends). Everyone thought I was crazy and I started to believe them.

I'm still convinced of the food connection (screw them, it's my vagina) and am having the hardest time eating. I don't want to eat. In fact, I hate eating. I never feel good after I eat and the food I do eat, doesn't appeal to me. I've lost a bunch of weight, my friends thought I had an eating disorder, and my long term bf got sick of having a sick girlfriend. Awesome.

I've been tested for colitis, refractory celiac, you name it. Everything is negative.

I'm ready to jump off of one of the many bridges in Portland. I am tired and don't want to live like this. My gi doc asks if I have hope, and if I drive but I am losing it quickly. It's been so long and I've lost so much I don't know what to do. This has affected every aspect of my life. I used to bake and I loved to entertain. Now I'm afraid of food and I feel like I can't do anything.

I tried to eat some almond butter (trying to add things back) and I've been pooping so much lately, my lady parts hurt. I have some kind of an abrasion on my labia (way lower, closer to anus) and I'm sure it's from the frequent bathroom trips. I have several trips a day and it's usually super loose. I went to the gyno today who said it looks like nothing but checked for herpes. Double score.

I was smoking pot to help with the WICKED nausea (I'm super barfy in the am after my first bathroom trip) and to help me eat (it really is that bad) but my GI doc recommended I stop because the withdrawl symptoms can cause everything I'm trying to avoid. He gave me peppermint pills which haven't done a whole lot but I'll stick with them. However, they do nothing to help me eat.

Celiac was easy. My mom and sister had it for years before me, so I knew exactly what to do and how to do it. HOWEVER!!! For whatever reason, I didn't respond well to a gluten-free diet. I've been dairy free for a long time as well but I don't know what to do.

I am so tired and so sad. I don't want to cry anymore. I just want my life back.

[dilettantesteph]

Your problems might be caused by reaction to low levels of gluten cc. Try a whole foods diet. Don't eat any processed foods, just meats and produce, only fresh spices. Wash everything. Only eat in shell nuts that you shell yourself. Buy your meat packaged in the meat processing facility, not repackaged by the store. See if that helps. You may be a celiac who reacts to very low levels of gluten. A week or two of this diet should be enough for you to find out. Also avoid soy, dairy, chicken, citrus, mushrooms, tomatoes, potatoes. They can cause problems with some celiacs.

[luvs2eat]

Your problems might be caused by reaction to low levels of gluten cc. Try a whole foods diet. Don't eat any processed foods, just meats and produce, only fresh spices. Wash everything. Only eat in shell nuts that you shell yourself. Buy your meat packaged in the meat processing facility, not repackaged by the store. See if that helps. You may be a celiac who reacts to very low levels of gluten. A week or two of this diet should be enough for you to find out. Also avoid soy, dairy, chicken, citrus, mushrooms, tomatoes, potatoes. They can cause problems with some celiacs.

I don't know if you were responding to princess hungry above, but... because she's my youngest daughter... I can tell you that her kitchen is completely and totally gluten free. The child is down to about 10 foods... eggs, salmon, white rice, apples, and a few other simple things... NO spices whatsoever and very limited produce. If there's any CC happening... it's coming in on the grocery bags!!

The morning barfy thing bothers me. Why would someone eat food... sleep all night... and then feel barfy in the morning AFTER having a bowel movement? Wouldn't most of the food eaten the night before be farther down in the digestive system? Her medical journey has been such a mystery!!

[domesticactivist]

I don't know about what you are going through, but I wanted to chime in that my son experiences sensations like you described in his leg below his surgery site. The main nerve was not severed, but was moved. The surgeon said sometimes it takes months or years, but it does often heal and regain normal levels of sensitivity. Is there a chance you could be experiencing the same sort of recovery from nerve damage? Maybe there are supplements that would help restore the nerves.