Suggestions?

[Victoria1234]

So in 2007 I started having constant abdominal pain. I had DH for years on my elbows, no reason given by doc other than "allergies". I had many tests done but no celiac panel. I was always anemic and constipated my whole life. I even had my uterus removed in January of 2008, seeking pain relief. The uterus was tested and was actually just fine,

Shortly afterwards we found out about celiac online and I went gluten-free....

i think it was February 2008. My pain immediately went away as well as the dh.

my question to you today is, should I even worry about a doc's diagnosis after this long a time being gluten-free? I'm wondering if there is a purpose for it at this juncture? I am pretty symptom free except for C when I've been glutened, plus some seboritis dermatitis (sp?) flares up as well. No pain, except for the chronic pain for when they botched the hysterectomy and damaged some nerves which is handled by a script.

thanks for any help. I just don't know what to think anymore after reading this board!

 

[Jmg]

Hi Victoria and welcome

32 minutes ago, Victoria1234 said:

my question to you today is, should I even worry about a doc's diagnosis after this long a time being gluten-free? I'm wondering if there is a purpose for it at this juncture?

Honestly? I don't think so. There's absolutely no treatment other than the gluten-free diet. You've established that going gluten free resolves your symptoms and you've adjusted to the diet. Testing would involve a gluten challenge of at least 8-12 weeks, probably longer with the waiting time for an endoscopy to confirm. The only change at the end of it would be a mark on your records that said 'celiac' or a mark that says, 'non celiac gluten sensitive'. I don't think you'd have much to gain and many people find that going back on to gluten for a challenge is worse than it was to begin with, that was my experience. 

You could go to your doctor and ask that your gluten issue be recorded in your records so that if you're ever hospitalised people know to give you the gluten-free diet. Otherwise I'd just get on with being healthy and enjoying life. This isn't an area where much of the medical profession shine in any case as you well know. I get annoyed that gluten took my appendix, I can't begin to think how you felt with the hysterectomy.

All the best,

Matt

 

ps If your ordering food in a restaurant or fielding questions from a stranger just self declare as celiac. I do, and the celiac police haven't caught me yet

[Victoria1234]

Thanks so much! Sorry you had surgery too. Me, well it wasn't too heartbreaking as I already had 3 happy healthy boys. No more babies were being plannned! But I have been going thru menapause since.... think hot flashes for years!

 I shall start using the word celiac. I always would say allergy. But people are so much more knowledgeable these days.

although I wouldn't mind a couple months of honest to goodness real bread, pizza and cake! Body probably would hate it though, but my heart would be happy. But to be truthful, no amount of pain killers took away the gluten pain. And I had some great meds, lol!

thanks again!!!

ps great idea to make it official with the doctor 's office.

[cyclinglady]

I am diagnosed, but my hubby is not.  He has been gluten free for 16 years  (just four for me) and there is no way he would go back on gluten in order to get an official diagnosis.  Just keep in mind that your children/siblings/parents should be screened.  celiac disease is genetic.  They  may present differently than you.  Some celiacs have no symptoms s at all!  

If I had DH, I would never do a challenge!  

[Jmg]

5 minutes ago, cyclinglady said:

If I had DH, I would never do a challenge!  

That is a good point. About a year or so into gluten-free I ate some barley malt cereal which I thought was ok. I started to get a very itchy rash on my elbows. I stopped the cereal and it luckily went away. If that was DH I don't think I'd be much fun to be around if I had 12 weeks plus with it plus additional months with it hanging around after testing. 

 

19 minutes ago, Victoria1234 said:

Sorry you had surgery too.

Hey I got off school for a couple of weeks and have an interesting scar. It's not all bad news

 

[Victoria1234]

18 minutes ago, cyclinglady said:

I am diagnosed, but my hubby is not.  He has been gluten free for 16 years  (just four for me) and there is no way he would go back on gluten in order to get an official diagnosis.  Just keep in mind that your children/siblings/parents should be screened.  celiac disease is genetic.  They  may present differently than you.  Some celiacs have no symptoms s at all!  

If I had DH, I would never do a challenge!  

Great point.... should get the boys tested as long as they are on our insurance!

dh was awful. I thought I was allergic to something at work (I taught ceramics) but it would continue over summers. Thought I'd go nuts! So ugly too. Went thru a lot of hydrocortisone which never really helped.

 

[Victoria1234]

17 minutes ago, Jmg said:

That is a good point. About a year or so into gluten-free I ate some barley malt cereal which I thought was ok. I started to get a very itchy rash on my elbows. I stopped the cereal and it luckily went away. If that was DH I don't think I'd be much fun to be around if I had 12 weeks plus with it plus additional months with it hanging around after testing. 

 

Hey I got off school for a couple of weeks and have an interesting scar. It's not all bad news

 

When I get glutened I don't see the dh  but I can feel the itch coming on!

And glad you have a cool scar!

because of this board I learned corn flakes had gluten! Was using them ground up for breading ! Just twice, but now I know about barley malt!

 

[Jmg]

 Are you in the uk? There are some good nestle go free cornflakes on sale at the supermarkets here, I really like them

[Victoria1234]

16 minutes ago, Jmg said:

 Are you in the uk? There are some good nestle go free cornflakes on sale at the supermarkets here, I really like them

I wish! I love the U.K.! No, sadly I'm in the USA.  Plus gluten-free food here always seems to be double the price. Thanks though!

 

[Jmg]

35 minutes ago, Victoria1234 said:

 Plus gluten-free food here always seems to be double the price.

When I lived in California I was always surprised by how much some things were, like bread for instance whilst huge cuts of meat seemed really cheap. It was only when I returned I realised that the European systems of food subsidies affected prices of grain based foods whilst all the growth hormones in US beef presumably made it cheaper to produce (I could be wrong about this of course). I guess its possible that the same logic applies to the gluten free foods. They're more expensive here definitely, but maybe not as big a difference as you guys experience. 

Anyway I'm missing the States at the moment and everything over here is crazy. Care to swap?

[Victoria1234]

7 minutes ago, Jmg said:

When I lived in California I was always surprised by how much some things were, like bread for instance whilst huge cuts of meat seemed really cheap. It was only when I returned I realised that the European systems of food subsidies affected prices of grain based foods whilst all the growth hormones in US beef presumably made it cheaper to produce (I could be wrong about this of course). I guess its possible that the same logic applies to the gluten free foods. They're more expensive here definitely, but maybe not as big a difference as you guys experience. 

Anyway I'm missing the States at the moment and everything over here is crazy. Care to swap?

Well they do say the grass is always greener, yet I think politics with the British accent is much more interesting. Plus I find the royalty fascinating. 

I'm always surprised how cheap our chicken breasts are. My family of 5 lives on them and they're 1.99$ a pound. We never buy steak, sometimes ground beef when on sale.. My 3 boys are certainly big meat eaters and my husband usually makes bread. Cheap loaves of bread are a little over $1 but they are terrible quality!

[Jmg]

3 minutes ago, Victoria1234 said:

Well they do say the grass is always greener, yet I think politics with the British accent is much more interesting.

Just as long as you don't pay any attention to the nonsense they're actually saying

I used to LOVE being in a bar in Cali and an amazing looking girl saying those words that every guy wants to hear:

'Hey I love your accent' 

Doesn't happen so much over here 

I'm a big, how can I put it, Americanophile? Yankophile? but US bread sucked when I was there. It was expensive and it wasn't very good, aside from maybe the odd artisan sourdough which I did really like. Of course now I realise I should've avoided all of it

 

[Victoria1234]

7 minutes ago, Jmg said:

Just as long as you don't pay any attention to the nonsense they're actually saying

I used to LOVE being in a bar in Cali and an amazing looking girl saying those words that every guy wants to hear:

'Hey I love your accent' 

Doesn't happen so much over here 

I'm a big, how can I put it, Americanophile? Yankophile? but US bread sucked when I was there. It was expensive and it wasn't very good, aside from maybe the odd artisan sourdough which I did really like. Of course now I realise I should've avoided all of it

 

I went to Paris and Florence and died inside not being able to eat all the goodies.

Yes, we love accents here. Give us a good British accent and we will do nearly anything. I watch basically all BBC shows or Korean dramas ! 

[GFinDC]

Hi Victoria,

If you were diagnosed with DH, then you have celiac disease.  Only people with celiac disease get DH.  They diagnose it by taking a skin biopsy from clear skin next to a lesion.  And then looking at it to see if IgA antibodies are present.  There is a section of the forum for DH that has more info, including tips on avoiding flare-ups of the rash.  Like avoiding iodine while a rash is present.

[Victoria1234]

49 minutes ago, GFinDC said:

Hi Victoria,

If you were diagnosed with DH, then you have celiac disease.  Only people with celiac disease get DH.  They diagnose it by taking a skin biopsy from clear skin next to a lesion.  And the looking at it to see if IgA antibodies are present.  There is a section of the forum for DH that has more info, including tips on avoiding flare-ups of the rash.  Like avoiding iodine while a rash is present.

Really?! Wow! Ok then, I've got it then. Better get my boys tested asap.

thanks so much for letting me know!

[Jmg]

18 minutes ago, Victoria1234 said:

Really?! Wow! Ok then, I've got it then. Better get my boys tested asap.

thanks so much for letting me know!

Note that DH is Open Original Shared Link not seborrheic dermatitis - sorry if you already knew this but I thought it may not be clear from reading your earlier post

 

[Victoria1234]

Had dh on elbows years ago which gets vaguely itchy when I've been glutened, and have sd now which flares up now and again and have to use a steroidal cream for it. Big difference in look and feeling! Sorry I was not very clear!

[Jmg]

24 minutes ago, Victoria1234 said:

Had dh on elbows years ago which gets vaguely itchy when I've been glutened, and have sd now which flares up now and again and have to use a steroidal cream for it. Big difference in look and feeling! Sorry I was not very clear!

My mistake I thought you may have been referring to the SD but I just reread your first post! 

Do you eat dairy? I find the dairy exacerbates my sd 

 

[Victoria1234]

10 hours ago, Jmg said:

My mistake I thought you may have been referring to the SD but I just reread your first post! 

Do you eat dairy? I find the dairy exacerbates my sd 

 

No problems!

I went thru a non dairy year or three at the beginning. Then I reintroduced slowly. Seems to make no difference in the sd.... 

[Jmg]

34 minutes ago, Victoria1234 said:

No problems!

I went thru a non dairy year or three at the beginning. Then I reintroduced slowly. Seems to make no difference in the sd.... 

I allow myself occasional yogurt and ice cream and the small amount of milk in some processed foods, so I'm not strictly speaking dairy free but too much dairy goes to my skin. I pigged out on milk chocolate awhile ago and found that wasn't an option either...

That said, it's heaps better than it was. I had awful flaking scalp, rash on chest, spots on neck and scalp etc. It all became 'normal' till I finally put glu and ten together...

[Ennis-TX]

2 minutes ago, Jmg said:

I allow myself occasional yogurt and ice cream and the small amount of milk in some processed foods, so I'm not strictly speaking dairy free but too much dairy goes to my skin. I pigged out on milk chocolate awhile ago and found that wasn't an option either...

That said, it's heaps better than it was. I had awful flaking scalp, rash on chest, spots on neck and scalp etc. It all became 'normal' till I finally put glu and ten together...

I know dairy is very tempting....but for god sake man try the dairy free options   >.>  I pig out on dairy free ice cream, coconut yogurt, and dairy free cheese, like it makes a good chunk of my diet. >.< I also found a dairy free cream cheese extract....that stuff ends up in everything just that hint of cream cheese flavor to eggs, dips, porridge....oh YES. Just wish these options were not so expensive......Making vegan grain free garlic bread tmw with a hint of cream cheese extract I think the blend of mozzarella, garlic, butter flavored coconut oil, with a hint of cream cheese extract might be a epic combination of richness and savory god level goodness.....or the cream cheese extract might overload it and bomb the batch

PS need chocolate, try enjoy life, gerbs, or Lilly's for dairy free options Another addiction of mine I go through a 8oz tub of Hershey cocoa a week. I love making sauces out of and sprinkling it on everything.

[Victoria1234]

5 hours ago, Ennis_TX said:

I know dairy is very tempting....but for god sake man try the dairy free options   >.>  I pig out on dairy free ice cream, coconut yogurt, and dairy free cheese, like it makes a good chunk of my diet. >.< I also found a dairy free cream cheese extract....that stuff ends up in everything just that hint of cream cheese flavor to eggs, dips, porridge....oh YES. Just wish these options were not so expensive......Making vegan grain free garlic bread tmw with a hint of cream cheese extract I think the blend of mozzarella, garlic, butter flavored coconut oil, with a hint of cream cheese extract might be a epic combination of richness and savory god level goodness.....or the cream cheese extract might overload it and bomb the batch

PS need chocolate, try enjoy life, gerbs, or Lilly's for dairy free options Another addiction of mine I go through a 8oz tub of Hershey cocoa a week. I love making sauces out of and sprinkling it on everything.

Sounds delicious!!!!!!!!!!!!!! I'm so hungry right now.

[Jmg]

On 5/4/2017 at 0:42 PM, Ennis_TX said:

know dairy is very tempting....but for god sake man try the dairy free options   >.> 

I have, well, some of them...    Have to say on taste grounds I've not found a soy yogurt I much like as yet. Plus I think I tolerate yogurt pretty well, certainly better than dairy milk which I no longer have, I have the coconut stuff instead. Some of this is cost and convenience based as well. Summer is approaching here and life without ice cream would drive me  You are an inspiration however mate, I've a shelf full of paleo cook books, I'll get one down, dust off the almond flour and see if I can't make something nice!

[Victoria1234]

On 5/4/2017 at 7:42 AM, Ennis_TX said:

I know dairy is very tempting....but for god sake man try the dairy free options   >.>  I pig out on dairy free ice cream, coconut yogurt, and dairy free cheese, like it makes a good chunk of my diet. >.< I also found a dairy free cream cheese extract....that stuff ends up in everything just that hint of cream cheese flavor to eggs, dips, porridge....oh YES. Just wish these options were not so expensive......Making vegan grain free garlic bread tmw with a hint of cream cheese extract I think the blend of mozzarella, garlic, butter flavored coconut oil, with a hint of cream cheese extract might be a epic combination of richness and savory god level goodness.....or the cream cheese extract might overload it and bomb the batch

PS need chocolate, try enjoy life, gerbs, or Lilly's for dairy free options Another addiction of mine I go through a 8oz tub of Hershey cocoa a week. I love making sauces out of and sprinkling it on everything.

Did paleo make you lose weight? I have an extra 10 pounds I'd like to drop. I find being gluten-free is hard enough, but see friends posting paleo on FB showing yummy looking food.

[Ennis-TX]

28 minutes ago, Victoria1234 said:

Did paleo make you lose weight? I have an extra 10 pounds I'd like to drop. I find being gluten-free is hard enough, but see friends posting paleo on FB showing yummy looking food.

Actually on a ketogenic diet, nothing but fats and protein no carbs, no fruits, no grains, no sugars. I consume massive amounts of protein and moderate fats. I am actually slowly putting on weight....but I am 127-129lbs and 5'11" I have less then 18% body fat. Once you hit ketosis you body burns fat for energy not carbs. So if you are late on a meal, forget a snack, or do not eat enough it eats fat stores first then your own body . Bit brutal actually having to eat every 3-5 hours lol.    NOTE I am on this diet for medical reasons. I have recently learned I got UC so sugars/carbs cause flare ups. Celiac so no gluten, lactose intolerant...,,yeah .....On the bright side I recently found some great breads that are paleo with no carbs or grains then started making my own out of the same ingredients. No bloat starch free gluten-free bread, make my own cheesy garlic, and cheesy cheddar biscuits no grains....diets actually pretty damn good. I love I do not bloat, have so much energy. Just hate the expenses of eating all the nuts, egg whites, seeds, and fresh veggies.