Welcome thread?

[DevilGluten]

Hi guys.  Just signed up for the site and was wondering if there was a welcome thread or something just to get to know who is who.  Hoping this place can help guide me... I was recently diagnosed with Celiac after a biopsy.  To confirm it my doctor is sending me for about 7 blood tests (haven't gotten them yet).  But Celiac makes a lot of sense because I have been dealing with seemingly random and frustrating symptoms for 15 years now.  Kind of happy and bummed with the diagnosis at the same time.  Glad that I may have finally found SOMETHING to explain all the random health issues I have been experiencing.  My last doctor began to think I was a hypocondriac because everything he tested me for came back negative.  But I've had unexplained pneumonia, a lung abscess, pluerissy, pericarditis, joint pain all over (although usually one joint at a time), fatigue, rashes, and of course tons of stomach issues.  So if the diet will help, I am all aboard.  My symptoms have been getting worse lately... been experiencing migraines and even bloody stool after a night of drinking.  Pretty bummed though because all the stuff I love to eat is on the banned list.  Most notably pasta and bread.  So bummed I am losing my pasta and bread.  I know there are gluten free alternatives out there but they are not the same.  I just had my first gluten free sandwich bread this afternoon - Rudi's bread.  It was ok.  Edible.

Anyway, just relieved to have some place to come and talk about this because I don't know anyone that has this or even has knowledge about it.  Some random thoughts to finish up....

1.  Knowledge is so key.  I've researched my symptoms a ton of times over the years and never came across celiac as a possible cause for anything but the stomach issues.  Seems even my doctor wasn't very aware of it because he never sent me for a test for it, even after testing me for everything else under the sun.  Which brings me to my second point.... 

2.  If you are having similar issues, find a good doctor!  I loved my doctor that helped me with my pneumonia and lung abscess but in 10+ years of seeing him, he never put 2 and 2 together to come up with celiac as a potential cause of my issues.  I even saw a GI doctor about 10 years ago who gave me an endoscopy and said I just had GERD.  No biopsies done or anything.  He was more pissed that I gagged on the endoscope when I woke up.  I actually gave up for a few years and just thought I'd have to live with it.  But things have been getting progressively worse in the last few months.  I just started seeing a new doctor who listened to all my symptoms (most notably the bloody stool) and sent me to a specialist.  That specialist DID do biopsies and one of them showed celiac.  So my advice is if you think your doctor is ill informed or dismissive, please get a second opinion.  It took me 15 years to get this diagnosis.  Extremely frustrating.  But I think I found a good couple of doctors now to help me so I am hopeful.

Anyway, sorry for the long post.  Been waiting to get this off my chest for a while now.  So glad I found this place.  Hoping to get lots of good info here.

 

[Ennis-TX]

Welcome we all have our own horror stories and many have had long struggles with diagnosis. I am sort of the forum sheldon, I have aspergers and looked to postive side of my disease, and opted to do what I was doing and enjoyed, I started  a small gluten free bakery and do chef jobs for people. I also got a ton of complications from this disease, other AI disease came about, and a list of intolerance and allergies.

One thing that got my attention, bloody stool is not as much associated with celiac as it is a other AI disease like Ulcerative Colitis....I had the bloody stool for years even after the celiac disease dia and gluten free diet. Ended up being UC.  Red blood is a sign the bleeding is in your large intestine, if it was black or tar like that is your small or stomach.  Celiac normally is in the small intestine, so I would get a colonoscopy to see if you like me developed another issue as complication from celaic like UC, Crohns, IBS, etc.  If you still have the bloody stool and the diet is not helping you might try drinking aloe vera inner fillet 8oz twice a day, 2 tsp or 2x 3pill doses of marshmallow root, and slippery elm as needed to sooth and coat it. Keep a food diary and see what triggers it....for me the obvious ones already removed where gluten, dairy, soy....as is the common for most people but mine also is triggered by carbs and the sugars glucose and fructose so I had to go on a almost keto diet of no starchy veggies, fruits, sugars, or grains living on fats and protein.

NOTE we suggest a whole foods only diet for the first few months and remove all dairy and oats. Dairy is problem for many and often hidden til you remove it for a few weeks. Issue is the damaged villi make it so you do not get the enzymes to break down dairy completely causing other issues. Oats are just commonly CCed and some cealics react to them like gluten.

Gluten free breads.....wait 4-12 months til you forget the gluten ones...then you welcome the subs. I use a few myself and mostly make my own since I can not have carbs either. Here are some helpful links

https://www.celiac.com/forums/topic/91878-newbie-info-101/
https://www.celiac.com/forums/topic/121148-gluten-free-food-alternative-list-2018-q2/

 

[DevilGluten]

Thanks Ennis.  Good info.  Dairy has always bothered me so I've avoided that for a while now.  So that is no biggie for me.  The oats either.  The bread though... man do I like my hoagies.  I heard that Jersey Mike's has really good gluten free sub rolls and when you ask for them, they change gloves and wipe down the counter and stuff.  So they seem to be one of the places that are more on top of it... I'll probably be there often.  Are cold cuts ok?  I know meat in general is but cold cuts are processed like crazy.

As for the blood, that kind of confused my doctor too.  He said the same thing you did... red blood would the large intestine.  So has gave me a colonoscopy and an endoscopy together... a 2-fer!  The colonoscopy was supposedly clear but the endoscopy is where they did several biopsies.  So he is not really sure about the red blood either.  I did have some diverticula (pockets in the large intestine) but he said that was fairly normal in most Americans because of the processed food diets.  It was not a concern to him.  But I suppose after a night of pounding jack and cokes, perhaps I irritated one of those a bit too much?  It started as normal diahhrea, then by the 3rd-4th-5th times it was mostly just blood.  Maybe I blew something out that day from being on the toilet so much lol.  That was the only time I've had bleeding like that.  But I have noticed some tarry stools over the years.

And thanks for the links!  That is how I found this site actually.  I was looking for a good comprehensive list of what I could and could not eat.  Super helpful!

BTW - Awesome idea with the business. 

[Ennis-TX]

18 minutes ago, DevilGluten said:

Thanks Ennis.  Good info.  Dairy has always bothered me so I've avoided that for a while now.  So that is no biggie for me.  The oats either.  The bread though... man do I like my hoagies.  I heard that Jersey Mike's has really good gluten free sub rolls and when you ask for them, they change gloves and wipe down the counter and stuff.  So they seem to be one of the places that are more on top of it... I'll probably be there often.  Are cold cuts ok?  I know meat in general is but cold cuts are processed like crazy.

As for the blood, that kind of confused my doctor too.  He said the same thing you did... red blood would the large intestine.  So has gave me a colonoscopy and an endoscopy together... a 2-fer!  The colonoscopy was supposedly clear but the endoscopy is where they did several biopsies.  So he is not really sure about the red blood either.  I did have some diverticula (pockets in the large intestine) but he said that was fairly normal in most Americans because of the processed food diets.  It was not a concern to him.  But I suppose after a night of pounding jack and cokes, perhaps I irritated one of those a bit too much?  It started as normal diahhrea, then by the 3rd-4th-5th times it was mostly just blood.  Maybe I blew something out that day from being on the toilet so much lol.  That was the only time I've had bleeding like that.  But I have noticed some tarry stools over the years.

And thanks for the links!  That is how I found this site actually.  I was looking for a good comprehensive list of what I could and could not eat.  Super helpful!

BTW - Awesome idea with the business. 

Eating out should also be avoided....its like Russian roulette. Look for gluten-free certified deli meats for making your own at home...I used to just roll up the meats with dairy free cheese spreads in them. Heck you can slice deli meats into fettuccine like strips and use in stir fry, soups or chopped in omlettes etc. Simple soups, stews omelettes, stir fries at home are easy, do bulk batches of stuff like crock pot roast or baked chickens then divided up and season each differently and meal prep. Keep stuff in the freezer etc. >.> I have made meal pouches out of food saver vacuum bags that just punch holes in right out of the freezer zap and done...I also found tovolo icecream tubs work great for freezing and keeping soups and smoothies. Free baked goods, but mostly I live off fresh made foods. I also tend to keep meal bars, and make meal shakes for trips and heading out.

LOL I have not been able to drink in a long time. I think I had 1/2 shot of rum with no issues on new years. I mostly just use extracts in drinks like rum extract or wine extract for that flavor. I do cook with rum sometimes, just a splash in a stir fry or in baked goods. PS jack is derived from gluten grains...might be distilled and should be safe but most here would still avoid it like the plague.

[DevilGluten]

7 minutes ago, Ennis_TX said:

Eating out should also be avoided....its like Russian roulette. Simple soups, stews omelettes, stir fries at home are easy, do bulk batches of stuff like crock pot roast or baked chickens then divided up and season each differently and meal prep. Keep stuff in the freezer etc. >.> I have made meal pouches out of food saver vacuum bags that just punch holes in right out of the freezer zap and done...I also found tovolo icecream tubs work great for freezing and keeping soups and smoothies. Free baked goods, but mostly I live off fresh made foods. I also tend to keep meal bars, and make meal shakes for trips and heading out.

LOL I have not been able to drink in a long time. I think I had 1/2 shot of rum with no issues on new years. I mostly just use extracts in drinks like rum extract or wine extract for that flavor. I do cook with rum sometimes, just a splash in a stir fry or in baked goods. PS jack is derived from gluten grains...might be distilled and should be safe but most here would still avoid it like the plague.

Yeah, I don't typically drink Jack so I wasn't super familiar with how they make it.  Plus this wasn't on my radar yet.  I don't drink a lot but when I do it is almost exclusively vodka.  I generally never have problems with that.  Beer though... OMG beer messes me up.  I've avoided beer for a while now.

And the home cooked thing seems to be the way to go.  That's the advice I am seeing everywhere.  That is a major lifestyle change for me though.  I LOVE eating out.  That is probably what bums me out the most.  I also do like to cook but when I do, it is usually something on the banned list lol.  So I'll have to learn a whole new menu.  I guess new cooking skills is a positive side effect lol.