31 replies to this topic

[squirmingitch]

You may not believe me but a ton of your chronic pain could be from celiac. I don't care what they dx'd you with pain wise ---- a lot or all could be from celiac.

I was dx'd with DJD & DDD & was getting epidurals. Since going gluten-free --- haven't needed one. One yr. gluten-free now. Can't EVEN believe the difference!!!!! I was having such horrid, horrid pain! It was pain so bad it was like having a broken bone & no pain meds. The pain was so bad opiates didn't touch it. The only thing I could do was ice packs until I got so numb I couldn't feel anything. I know that damages tissue but I didn't care --- I had to have some relief! That was before the epidurals. It was any portion of my body. Arm, leg, shoulder, knee, foot, hand, wrist, between elbow & wrist, shin, hips, neck, you name it.
And yes, I have the MRI's to prove I have spine/disc problems but I can't believe the diff. since gluten-free. Once in a while now I will get an area that flares but it isn't anywhere near like it used to be & it doesn't last as long either. It used to last 4 - 8 days & now it's 1 or 2.
ou drink
You need to talk to the doc about getting iron injections instead of the pills. How about instead of taking vit C pills you drink apricot nectar? Not as rough on your tummy, you get 100% Vit C & not as apt to aggravate the dh.

[Darkfire Ann]

You may not believe me but a ton of your chronic pain could be from celiac. I don't care what they dx'd you with pain wise ---- a lot or all could be from celiac.

I was dx'd with DJD & DDD & was getting epidurals. Since going gluten-free --- haven't needed one. One yr. gluten-free now. Can't EVEN believe the difference!!!!! I was having such horrid, horrid pain! It was pain so bad it was like having a broken bone & no pain meds. The pain was so bad opiates didn't touch it. The only thing I could do was ice packs until I got so numb I couldn't feel anything. I know that damages tissue but I didn't care --- I had to have some relief! That was before the epidurals. It was any portion of my body. Arm, leg, shoulder, knee, foot, hand, wrist, between elbow & wrist, shin, hips, neck, you name it.
And yes, I have the MRI's to prove I have spine/disc problems but I can't believe the diff. since gluten-free. Once in a while now I will get an area that flares but it isn't anywhere near like it used to be & it doesn't last as long either. It used to last 4 - 8 days & now it's 1 or 2.
ou drink
You need to talk to the doc about getting iron injections instead of the pills. How about instead of taking vit C pills you drink apricot nectar? Not as rough on your tummy, you get 100% Vit C & not as apt to aggravate the dh.

Part of it, YES. It could have made my spine weak but I have 5 MRI's confirming cervical spinal stenosis requiring surgery and am at 9MM in one part of my spinal canal I get to 5MM and I have no choice, they will do the surgery with or without my consent as I won't be able to walk. I have five+ herniated discs one is a vertical herniation too not the normal kind. I have nerve damage all the way down my left arm, confirmed with nerve conduction and EMG studies. So maybe It has weakened my spine but it is not JUST Celiac aches and pains. Yes I have DDD too and more medical terms I can't remember. They cannot and I won't let them shoot me up. People died recently from some shots. My husband will probably punch the next doctor that even hints at sticking a needle in my back unless I have no choice but to have surgery. I was clean for a year and in the same amount of pain. I was clean before for years with the same pain. The EXTRA joint pain, oh yes I KNOW that is Celiac. I even white knuckled the pain for a year until an earthquake put me on the floor again and since then two car accidents one rear end one head on(none our fault)....yah I am back on pain meds. Neck damage doesn't even hurt most people until they need surgery. Mine is so bad sometimes my throat collapses because there isn't enough muscle to keep everything in the right place. They can't unwind the muscles in my neck and shoulders with two muscle relaxers and massage because my spine is so damaged the muscles have no choice but to contort to hold up my head. lets not even talk about the headaches shall we...ug. I am 39 yrs old on Medicare. It is sad sad sad.

I need dried apricots for lots of good things. It's just hard to eat until late. Juice is harder for me, but I even have the apricots and I like them but my eating is so weird. Ok I guess I am so scared I don't eat until I am ready to pass out. Right now the doctors will not do a thing until the steroids are out of me. Blood work is useless and they won't touch me without more tests. So I have two choices, the ER or treat as I can for a bit. Pretty much the standard answer is go to the ER. MY PCP is worse than useless. My neuro is doing all she can and the Derm is ready to admit me to the hospital. None of these options are good for me. SO I ....I dunno. New PCP is on the horizon trying to find a Celiac trained doctor right now. Husband is helping me scour through doctor profiles.

I do know Celiac can do lots of harm but blaming my entire medical profile on one thing, Celiac, Menopause, Failed Surgery, Mental Illness, - all cannot be true and is dangerous. We run the risk of missing something important, like they did and I ended up this way. It cannot be all attributed to Mental Illness and Celiac...or Menopause but the doctors want to pin all of my problems on one thing and it has caused me to lose countless hours, dollars, my ability to work and many many tears.

I do thank you for all your knowledge. It helps so much. Please don't stop. Please do not think I am disagreeing with you. I do know glutening myself made it worse....not to mention 150 pounds is hard on the joints too:(

[squirmingitch]

Okay. I'm not going to stop dear. I don't think you are disagreeing with me & even if you did ..... it's not against the law. Good things can come from hearty discussions batting things back & forth.
Oh I know the let's blame everything on menopause diagnosis. AND the "let's put you on antidepressants!" Very gleefully said & with a crazed look in their eyes. And how many people on this board who have been told countless times the same things!!!!!!!

And I am not denying you have legitimate pain from damage in the accidents, just plain life & DDD. What I am saying is that I think you will be amazed at how much pain will go away in time, gluten-free, & healing from gluten damage. Let me term it another way ---- despite the experiences I read on this board I never thought so much of my pain would go away simply from being gluten-free. I have been surprised!!!! Verily! I am surprised your neuro isn't apparently aware of just how much gluten affects the neurological aspect.

Have you checked the forum here for good docs in your area? And if you don't find anything there then POST there saying you're looking for a good this or that doc in your area. Also local celiac support groups can be a wealth of information in that regard.

And I understand & agree that it's not smart to blame everything in your medical profile on celiac & possibly missing something important in the process.

But rest assured that healing does happen. Healing takes time but it DOES happen! You can bank on that one.
I sincerely hope that one year from now I will see you posting about how much better your life is than it was one year earlier. There have been many, many who have done so & it is wonderful to read the stories.

Now, I want to address the issue of you eating or rather being afraid to eat or maybe terrified to eat. Honey, You CAN'T be afraid of food! Do not let that devil paranoia take you down!!!!! Do not let it terrorize you. If you do then you are lost. You have to stand up straight, head up, shoulders back & scream that demon down. Go ahead, I dare you.
Do not wait until you're about to faint to eat. Eat regular meals. Not eating like you're doing is not helping to get the weight off. Eating regular meals WILL.

[diandliam]

Hi all,
I haven't been on the forum since May so it is nice to return with some good news. In May of 2011 I was working in a bakery and after about 6 months I became ill with another sinus infection. I had a few days off sick. First day back at work and six hours later the aweful itch which had started at my feet had made it's way all the way to my head. I didn't work another day at the bakery. So then I was unemployed and covered in that evil head to toe.
For me (living near Canberra, Australia) the doctors were hopeless, pointless or unaffordable.
(Tip 1: get on here and find out reliable doc's and specialists asap)
Initially but only briefly I was confused and in denial that such a staple or even food was to blame.
(Tip 2: Do lots of research and reading. If you suspect or know gluten is the problem read all you can.)
So I removed gluten from my diet but kept a gluten house.
(Tip 3: Don't do this. I haven't read or heard of anyone on this forum (with DH) who claims to keep a gluten house and deal with DH)
So May to about July/August 2011 I continue to suffer head to toe with little improvement. Lots of other issues resolve (brainfog, intenstinal, nerve spasms etc etc). So after much discussion with my then 9 y/o son (single mum) he convinced me that gluten had to go.
(Tip 4: Get your household on board. Educate them. )
So the house is gluten free and I'm learning how to read labels, what gluten free products are available where etc. Still itching head to toe. By this stage I'm literally going mad with lack of sleep despite the help of this forum and its amazing support.
(Tip 5: I would have been doped, forced sleep in an asylum without ice packs - the soft flexible ones rotating in/out of the freezer all night - wet soft towels and Canberra winter)
In October 2011 I went to Sydney for my sisters 40th. First time away from home. I was terrified. And I had a massive resurgence of the itch probably due to the 'corn flour' or cc in the only restaurant I ate at.
(Tip 6: When travelling have everything ready - esky (cooler?), ice packs, fruit, gluten free products - otherwise do your homework - what shops, restaurants are going to be available etc. )
When I got home I went room by room and got rid of bags and bags of stuff (esp laundry and bathroom). I removed all processed food from my diet.
(Tip 7: By processed I mean ALL. No salt/pepper, dried / canned / in plastic - ALL. I ate only fresh meat, veg and fruit. No nuts or grains at all.)
And so the itch started to settle. Slowly, slowly, slowly
(Tip 8: I know how hard it is but be patient, breath and drink a crap load of water. I drink probably 2-3 litres a day I think it is an important key to the puzzle)
By December 2011 I was starting to see a big difference. And so I started to reintroduce. Started with the basics, salt/pepper, rice. Then rice only products ((only made in Thailand - reduced risk of cc in factory - Aussie rice made me vomit literally))
(Tip 9: Introduce one product/ingredient at a time and wait a few days. Try it again. Third time lucky For me this includes laundry/bathroom. )
It has been trial and error ever since but I have found some great curry mixes, reliable brands, yummy grain free bread (Deeks here in Canberra) etc etc. My diet is probably 95% fresh on a bad day and many days are 100%.
From trial and error I have discovered that iodine doesn't have much effect unless very high over time, salicylates are a big problem but accumulative (the more I have over time the worse the itch - for me I have to exclude corn as much as possible).
In May I started working in childcare. I was a bit worried about meal times and gluten laddened hands on 20 x 2 year olds but I am very cautious and the people I work with are very understanding. I use a lot of disposal gloves at work and at home.
(Tip 10: Even gluten free products you use at home/work can be drying and/or abrasive - try to avoid contact with any chemical/abrasive products)
I itch occasionally now - a few spots here and there and nothing nearly as intense - nothing like the 12 months of hell. My intense and selfish regime of the last 18 months has seemed like a life time but it has given me my life back. I can work full time, I can play with my son, I can sleep, I can have coffee and a treat with friends and Mum at Deeks (though other restaurants are still and may remain off limits).

Sorry this one is a bit long but the journey has been too and I thought others might like to know how it's been and that it has worked for me.

[diandliam]

Oh and one final tip: don't work in a bakery

[mushroom]

Nice to see you back with the good news that you have conquered your food demons Newbies may not appreciate what effort you have put into this, but those who know, KNOW. Well Done!!! Ditto for your son.

And, you have so many good tips to share. I am so happy for you.

[squirmingitch]

It's been a long road for you Diane. It's good to hear you're almost done itching!

[EM-MV]

For me, popping the blisters is not only satisfying but makes the area less itchy and start to heal. I wait until they get to the perfect hardness. Sometimes the blister fills right back up, for as much as a day. Does anyone else find this to be true?

Also, in the summer I was able to get big spears of aloe. I kept it in the fridge and would put it on itchy areas. Worked very well.

I've also found tea tree oil to help with itching.

[squirmingitch]

I think most of us pop the blisters. I know mine feel like I'm being stung by fire ants & you will naturally end up scratching & eventually pop it but after living with dh I have found, for me, that popping them ends the fire ant sensation for a few hours then the intense itching sets in. I have tried letting the blisters run their course & they fill so much they end up bursting themselves --- doesn't matter ---- the all consuming itch still happens. No, I have not found healing to begin from popping the blisters. Healing, for me, seems to just take it's own sweet time. Grrrrrrrrrrrrrrrrrrrrr!

[Darkfire Ann]

I can get Aloe spears longer than my arm all year round for .99 cents a pop. I was using them before but it didn't seem to help. I might try again and put them in the fridge to cool me off. Thanks for the reminder I am having a bad night. And to the scratch to the root. Well it works for me on some of them. I mean dig past the blood and they weep clear fluid and keep digging and then it healed. Happened on a few spots but I am covered head to toe. So one or two healed blisters is not a win to me.

[sisterlynr]

For me, popping the blisters is not only satisfying but makes the area less itchy and start to heal. I wait until they get to the perfect hardness. Sometimes the blister fills right back up, for as much as a day. Does anyone else find this to be true?

Also, in the summer I was able to get big spears of aloe. I kept it in the fridge and would put it on itchy areas. Worked very well.

I've also found tea tree oil to help with itching.

I first had blisters on the soles of my R foot and had no clue it was DH and neither did many doctors. I would sterilize a needle and puncture the blister to release the fluid. It DID make the itch not as bad. Yes, mine would refill and I would repeat and I also applied athletics foot cream. The salve dried the blister and it would peel as it healed. I would then apply Bacitracin ointment to avoid infection. I have Type II Diabetes.

I then broke out on my shoulder and scalp and still no diagnosis. When my whole body broke out in Mar 2012, there were way too many blisters to break open. Let's just say I was covered like a blanket. I thought of shaving my body. . . was desperate to stop the itch. . . I'm on Dapsone and am recovering!

[tealiemonster]

I never had any luck with Triamcinalone (Kenalog) neither the cream or the shot :-/  I didn't get improvement with anything less potent then Floucininide, best result were with Clobetasol Propionate.  I found this listing a few years ago and it's really helped me visualize the different strengths of topical corticosteriods.  So every time I changed doctors I didn't end up with another low potency cream/ointment under a name I didn't recognize.

https://www.healthne...lidel_natl.html

But I must admit I agree  popping the blisters is the only relief from the pressure and pain of the blisters.  Mine always seemed to fill back up at least once and I'd end up scratching off the scab/crust again.  But once they turn into an itchy lesion then the Sarna was a great relief...

Nothing like self destruction to discover a good product.  It's like "let me cut myself so I can by these great bandaids" a little different I know, but I still feel like the whole thing is very self-perpetuated.

Edited by tealiemonster, 30 December 2012 - 06:34 AM.

[Darkfire Ann]

yah Lidex did nothing for me. That is the Floucininide. Super potent steroids did nada. I got stretch marks now le sigh. No relief but my rash went crazy when I stopped using them and I tapered off too.

[Hopeful1950]

Here's something I found that might provide some relief from the symptoms of DH. It's called Neurontin (gabapetin). It is used for restless legs, fibromyalgia etc. It was given to me years ago because of insomnia and fibro. A while back when I was having a really big awful flare of helllish itching, burning DH, I decided to see if it would help and it did! It really mellowed out the night time itching (I took it at bedtime) and seemed to have a lingering effect the next day. It is not a horribly sedating drug so it can be taken during the day if you don't have to drive or anything. It doesn't have any direct effect on the rash itself, just relieves that overall tingling, burning, itching that makes a person want to roll around on astro turf to make it stop.

[sisterlynr]

I can see where Neurotin would help with the symptoms. My Dad had spinal stenois and his legs burned and stung. He took Neuotin.

Just a word of caution while taking this drug. You have to wean off of it or can suffer seizures, which happened to my Dad once. It is helpful to neuropathy patients.