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Not Getting Better On A Gluten Free Diet

Tabclear

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Tabclear Newbie
Tabclear
Posted

Hi all,

 

This is my first post here, I didn't see an area for new user introductions so apologies if I missed it. I am hoping for some advice, or maybe some peace of mind by way of comparison with others. Sorry if I go down a route of too much information, not sure what the etiquette is here.

 

Last November I had an amazingly terrible bout of diarrhoea which lasted 2 weeks, at the same time I had an ALL over rash appear. It was raised itchy spots, millions of them everywhere, and in certain areas they got together to have party causing large areas of inflamed, swollen, itchy weeping sores. Area's included my inner thighs, armpits, groin and my read end. After a visit to the GP, although he said it doesn't look like dermatitis herpetiformis, he sent me for blood work for coeliac disease anyway. I googled DH and he was right, it looked nothing like DH so I have no idea why coeliac disease popped in to his head.

 

My results came back and my tTg levels were 114 so he referred me for an upper GI Endoscopy. Those results came back positive for coeliac disease. Although that was no surprise because the guy sticking the tube down my throat said he could see it was extremely inflammed.

 

Which brings me to now - 6+ months later on a gluten free diet and non the better for it. Well that's not exactly true, the excessive diarrhoea has gone, I'm down to only 3 or 4 times a day now - yay! I am managing the rash with daily moisturising and applying topical steroids on the parts that flare up. Managing may be too strong a word for it... it's bearable.

 

I live with a constant ache in my gut, and when it's not aching it's doubled over in pain unbearable; which is nice. I had a second endoscopy a couple of week ago because my gastroenterologist is concerned that my symptoms aren't abating. I get the results a couple of weeks. I have had bone density scans and an abdominal MRI scan, both were fine... I have had more blood tests than my arm cares to remember. All showing nothing except inflammation markers.

 

I have tried cutting out milk, lactose, soy, potato and corn all to no avail... I was on a meat, veg and rice diet for a solid 5 weeks, no condiments or sauces, not even salt and pepper. Limited veggies, peas, carrots, mushrooms. Not a single thing changed with my symptoms.

 

I have also suffered since childhood with eczema, asthma and allergies. Including hay fever and oral allergies to raw fruit like apples and pears, and nuts. My mouth and lips swell up like Mick Jagger. My quite severe eczema vanished when I entered my teens, then reappeared in my mid twenties on a few of my fingers. Since my rash and diarrhoea episode in November, my eczema is back in full force. My right hand looks like it's been through a meat grinder. I also suffer from PMLE, only recently diagnosed as I just thought it was my eczema hating the sun.

 

All in all my immune system hates me. The only rest-bite I have is when I am on oral steroids like prednisolone. I have the odd 5 or 10 days course when my eczema and rash(whatever is causing it) get out of control. It's like a dream!! All my symptoms, the rash and eczema clear up in a matter of days, the swelling vanishes. The big D vanishes. I no longer have any gut pain. I can go out in the sun without breaking out. Seriously, those couple of weeks, and for a few weeks after I stop the steroids, are the most amazing weeks of my life. I can't even explain how good it feels to have everything just vanish.

 

So does anyone else have a similar story? gluten-free, dairy free, soy free diet making no difference!. I pretty much just live on cooked meats, rice, vegetables and gluten free pasta.

 

Sorry for the long post, I'm as surprised as you with how much I actually had to say :-)

 

Tab

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dilettantesteph Collaborator
dilettantesteph
Posted

I am sorry.  That sounds rough.  Some celiacs at least initially do better avoiding processed foods.: Open Original Shared Link

 

It sounds like you are doing that except for your pasta.  If you ate only meat veg and rice for 5 weeks, that should have made a difference.  Did that include processed foods?  There may have been cross contaminaiton in them.  You could try unprocessed.

Also look at other sources of cross contamination.  Do you share your kitchen with gluten eaters?  Did you change colanders?  Do you eat out?  Could you also be sensitive to oats?  Do you use oat containing lotion on your hands?  I hope you feel better soon.

cyclinglady Grand Master
cyclinglady
Posted

I do not have DH, but despite your google search on photos of it, maybe you do have it. Have you searched this forum (especially, the DH section)?

I have read on this forum that it takes a really long time to resolve DH, unlike healing the gut. My heart goes out to you. I am hoping that those with DH will respond when they get a chance.

Tabclear Newbie
Tabclear
Posted
  • Author

I am sorry.  That sounds rough.  Some celiacs at least initially do better avoiding processed foods.: Open Original Shared Link

 

It sounds like you are doing that except for your pasta.  If you ate only meat veg and rice for 5 weeks, that should have made a difference.  Did that include processed foods?  There may have been cross contaminaiton in them.  You could try unprocessed.

Also look at other sources of cross contamination.  Do you share your kitchen with gluten eaters?  Did you change colanders?  Do you eat out?  Could you also be sensitive to oats?  Do you use oat containing lotion on your hands?  I hope you feel better soon.

 

It was just regular old fresh meat. Chicken breats, thighes etc... pork chops, steaks, lamb chops/legs/shoulders etc... Grilled or oven cooked.. EXTREMELY bland :-) Veggies were the frozen type with the occasional fresh one, mushrooms etc... and the rice, well.. that was rice.

 

I didn't eat out at all during the 5 weeks as I was determined to see if things improved so I could start adding things back and see what messed me up.

 

However I have eaten out since. It's quite easy here in the UK to eat out thankfully - as of this coming December it becomes law that all premises serving food to the public need to have all the ingredients of every dish available for the customer to see, along with allergy advice - gluten, dairy, nuts, soy, sulphites etc... As a result many of the bigger chains and even smaller pub type places are already doing it.

 

I am 99.9999% certain I am not getting CC. My diet is pretty limited already and my wife has gone gluten free with me, so the house is a gluten free place.

 

I do not have DH, but despite your google search on photos of it, maybe you do have it. Have you searched this forum (especially, the DH section)?

I have read on this forum that it takes a really long time to resolve DH, unlike healing the gut. My heart goes out to you. I am hoping that those with DH will respond when they get a chance.

 

Thanks for the advice, I will take a look at the DH section.

Tabclear Newbie
Tabclear
Posted
  • Author

I checked out the photos thread in DH section and my rash identical to the vast majority. The story's are eerily similar as well, location of the rashes, the spread. I am kinda pleased, and also kinda upset that I now have something else to try an figure out...

 

I have an appointment at the end of June with a dermatologist, guess I know what he is going to say now :-)

cyclinglady Grand Master
cyclinglady
Posted

Glad that you found your answers. You do not need a skin biopsy for diagnosis -- just continue to avoid gluten like the plague! Realize that one glutening can cause DH to rear it's ugly head! And to appear even if you have not had a recent exposure to gluten. I hear that ice helps. Be careful with meds -- every drug has risks.

Thanks for the restaurant information. I will be in the UK in less than a week. We are so excited -- especially my daughter who is both a Jane Austin and Harry Potter fan.

Tabclear Newbie
Tabclear
Posted
  • Author

Glad that you found your answers. You do not need a skin biopsy for diagnosis -- just continue to avoid gluten like the plague! Realize that one glutening can cause DH to rear it's ugly head! And to appear even if you have not had a recent exposure to gluten. I hear that ice helps. Be careful with meds -- every drug has risks.

Thanks for the restaurant information. I will be in the UK in less than a week. We are so excited -- especially my daughter who is both a Jane Austin and Harry Potter fan.

 

Yeah I have been quite lucky regarding the oral steroids, I haven't suffered any of the side effects. I know long term use causes other organ damage however.

 

A Jane Austin and Harry Potter fan, very diverse :-) Hopefully you'll have a blast... Not sure how you are with processed gluten free food, but all the major supermarkets over here carry what's called a "Free From" range of food - it's Gluten, Dairy and Wheat free. So for example Asda (owned by Walmart) has a HUGE Free From selection. My local Asda has two isles dedicated to Free From, not including the freezer section.

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dilettantesteph Collaborator
dilettantesteph
Posted

It is possible that mushrooms were the reason that your 9 week super clean eating period didn't work.  Many celiacs eat mushrooms without problems, but some more sensitive ones think the cross contamination of the growing medium causes them symptoms. 

https://www.celiac.com/forums/topic/104055-mushrooms/

Open Original Shared Link

I would have to say that I couldn't find any firm evidence for this, just speculation, but it might be worth another go with the super clean diet without mushrooms to see what happens.  It would be a good idea to go with fresh veggies and fruits rather than frozen, canned or dried as well.  That is what the Hollon Fasano paper I referenced above recommends.   In my experience, 2 weeks should be long enough to notice some difference.

 

I hope that you feel better soon.

Gemini Experienced
Gemini
Posted

Glad that you found your answers. You do not need a skin biopsy for diagnosis -- just continue to avoid gluten like the plague! Realize that one glutening can cause DH to rear it's ugly head! And to appear even if you have not had a recent exposure to gluten. I hear that ice helps. Be careful with meds -- every drug has risks.

Thanks for the restaurant information. I will be in the UK in less than a week. We are so excited -- especially my daughter who is both a Jane Austin and Harry Potter fan.

A comment on your impending trip........HAVE A GREAT TIME!!!!!!!  I will be crossing the Pond at the end of September so am right on your heels.  :D   Are you going to Bath to satisfy the Jane Austin fan?

 

Here is a restaurant that I have dined at about 5-6 times over a number of trips and I have never gotten sick.....not even an inkling of trouble.  They had a gluten-free menu the last time I was there in 2010.  Open Original Shared Link  It is a chain and they are all over the place.  Food has always been very good.

 

I apologize for hijacking this thread....I won't do it again.  ;)

cyclinglady Grand Master
cyclinglady
Posted

Yeah I have been quite lucky regarding the oral steroids, I haven't suffered any of the side effects. I know long term use causes other organ damage however.

A Jane Austin and Harry Potter fan, very diverse :-) Hopefully you'll have a blast... Not sure how you are with processed gluten free food, but all the major supermarkets over here carry what's called a "Free From" range of food - it's Gluten, Dairy and Wheat free. So for example Asda (owned by Walmart) has a HUGE Free From selection. My local Asda has two isles dedicated to Free From, not including the freezer section.

Thank you! So nice of you to respond! I made a note of your comments! I do plan on packing my collapsible cooler, some plastic dinnerware, etc. in anticipation of picnicking.

Hope you are feeling better soon!

cyclinglady Grand Master
cyclinglady
Posted

A comment on your impending trip........HAVE A GREAT TIME!!!!!!!  I will be crossing the Pond at the end of September so am right on your heels.  :D   Are you going to Bath to satisfy the Jane Austin fan?

 

Here is a restaurant that I have dined at about 5-6 times over a number of trips and I have never gotten sick.....not even an inkling of trouble.  They had a gluten-free menu the last time I was there in 2010.  Open Original Shared Link  It is a chain and they are all over the place.  Food has always been very good.

 

I apologize for hijacking this thread....I won't do it again.  ;)

Going to Bath and staying three nights at a gluten-free friendly B & B. Hubby delighted with your restaurant recommendation. Going to a resort/restaurant called the Lighthouse which is completely gluten-free and is 30 minutes away from Bath. No room at their inn, but another heavenly restaurant option. We thought we would be tailgating or picnicking most of the time. Thank you!

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