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Not What I Expected


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#1 ivy light

 
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Posted 01 September 2012 - 05:12 PM

Hey everyone,

First I want to say THANK YOU for what a huge help this forum has been. Even if I end up not being diagnosed with Celiac, I'm grateful for all the support and information I've seen while lurking here.

I had no idea that everything I've been going through can be linked to Celiac! The diarrhea/IBS, skin issues (keratosis pilaris and a small patch of DH), the vitamin deficiencies, the absolutely debilitating fatigue, and even an unexplained incident of a piece of bone breaking off my leg (that was surgically replaced).

I've got an endoscopy on Tuesday and I'm really worried about it. I'm still eating a "normal" diet but it's awful. Ever since I went gluten-free (or tried to) for three AMAZING days, my symptoms have gotten worse. That was almost a month ago and I've been bleeding after going D. No wonder the GI fit me in so fast...

I'm just scared and overwhelmed by the whole thing. The endoscopy, the possibility that it's not Celiac (but worse?!), and how I'll manage the diet. I'm not very good at menu-planning and I've been blessed with the type of body that just stays the right weight without effort. I had a nasty issue with Cheerios about a month ago that sparked this whole attempt to find a better diagnosis than IBS. When I first started researching Celiac, I figured it was just an allergy. Like...worst case scenario, if I'm out and want to have a big gluteny cupcake, then I'll just "pay for it later" with diarrhea. Now I know better, that it's an auto-immune disorder.

I'm sorry this is so long and I appreciate it if you've gotten this far. I will post my biopsy results as soon as I have them. I wish I could get out of this sickly rut and stop feeling so darn sorry for myself. It's just that it's been a very rough month and I'm not enjoying Labor Day weekend very much.

Take care,
Ivy
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#2 nvsmom

 
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Posted 01 September 2012 - 05:49 PM

Good luck with your endoscopy on Tuesday! :)

You don't have to be a great menu planner to eat well gluten-free, I find the key is just to make extra so you can always pack leftovers for lunches. LOL If you make eggs, make enough for two meals. Chilli is great to have in the freezer. Stuff like that. Oh, and I always carry a Lara bar in my bag in case of "snack emergency" ;)

I'm 2 months into the diet, and it does get easier. It seems almost simple now. You can do it. And the pay-off of no stomach aches, migraines or bloating? Good health is a really gratifying thing.

Best wishes to you. I hope you feel well soon.
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Nicole Posted Image

"Acceptance is the key to happiness."

ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012

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#3 GottaSki

 
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Posted 01 September 2012 - 09:01 PM

Welcome!

Transitioning to living gluten-free is very tough, but it does get easier with time. You mentioned you had an amazing three days when you tried removing gluten which bodes well that you will be feeling much better once you remove ALL gluten - which will give you more time and energy to help ease your transition.

You mentioned vitamin deficiencies, but I don't think you mentioned Celiac blood tests. Make sure you have a full celiac panel before you remove gluten. If you haven't had recent vitamin/mineral tests you might want to ask for B, D, K, iron, ferritin, copper and zinc so that you have all the starting data to compare future improvement. You should be able to have it done the same day as your endoscopy. You may have already had them all, but if not you could call on Monday to make sure it happens so that you can remove gluten as soon as your endo is done on Tuesday.

Good Luck :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#4 Marilyn R

 
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Posted 01 September 2012 - 09:36 PM

Welcome to the forum, Nicole!

You've been through so much, conquering a gluten-free diet will be so much easier in comparison.

Like NV'smom, I cook extras too, to either freeze or refrigerate. I'm not a menu planner either, and don't particularly enjoy grocery shopping. I've found a huge benefit from being gluten-free: you cut a substantial amount of time shopping by hitting only the meat, fish, produce and canned good sections of the store, sometimes the freezer section.

I'm glad your gastro worked you in and wish you a much improved quality of life!

Here are a couple of things that I've found helpful...

An indoor grill (The Indoor Grilling Cookbook" is fabulous and has many recipes that are quick and use things you'll have on hand or can substitute.) I got my copy at a thriftstore, so it may be out of print.

Boil some eggs every now and then. They're great to have when you don't feel like cooking but need some protein. You can make egg or tuna salad, or add them to a salad or just have one on it's own, make devilled eggs...and Salad Nicoise always cheers me up, which is just a salad somebody dreamed up with left over potatoes, green beans, tuna, chopped egg, some greens and a simple dressing.

I find peeling potatoes very boring but have discovered that you can watch a movie while peeling them, it just takes a little scheming (vs. planning). You need a pot for the spuds, a bowl for the peels, the bag of taters, a peeler, your couch, a movie...

Then you boil the potatoes, mash some of them and save others for breakfast or lunch. Leftover mashed potatoes are great microwaved or as the topping for shepard's pie.

You will soon be over the worst of it and ready to steam forward.

Wishing you well,

Marilyn
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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#5 GFinDC

 
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Posted 02 September 2012 - 06:53 AM

Hi Ivy,

Having a positive reaction to the gluten-free diet is a good sing you are on the right track. That wouldn't happen if there wasn't something going on when you eat gluten. Cooking your own food dosne't have to be complicated. You can cook a good meal in a simple skillet. For breakfast/lunch today I put onions, mushrooms, eggs and Daiya cheese sub shreds in a skillet and threw a lid on it. Usually I would add something green like peas or green beans too. Let it cook for 10 minutes or so on low heat and then chop it up and eat it in a corn tortilla. Rice wraps are available also from Rudi's.

Here's a bunch of threads that might help you get started. The meal threads for breakfast., lunch, dinner and desserts are good for ideas.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.


FAQ Celiac com
http://www.celiac.co...celiac-disease/

Newbie Info 101
http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?
http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?
http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?
http://www.celiac.co...ooking-tonight/

Dessert thread
http://www.celiac.co...399#entry802399

Easy yummy bread in minutes
http://www.celiac.co...ead-in-minutes/

How bad is cheating?
http://www.celiac.co...t-periodically/

Short temper thread
http://www.celiac.co...per-depression/

Non celiac wheat sensitivity article
http://www.nature.co...jg2012236a.html
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#6 mommida

 
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Posted 02 September 2012 - 07:07 AM

Thoughts and prayers for you through your testing.

Some peeps are here with other health issues that a gluten free diet help.

There is emotional support here for medical testing, no matter what the outcome is. :)
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Michigan

#7 ivy light

 
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Posted 02 September 2012 - 09:57 AM

Welcome!

Transitioning to living gluten-free is very tough, but it does get easier with time. You mentioned you had an amazing three days when you tried removing gluten which bodes well that you will be feeling much better once you remove ALL gluten - which will give you more time and energy to help ease your transition.

You mentioned vitamin deficiencies, but I don't think you mentioned Celiac blood tests. Make sure you have a full celiac panel before you remove gluten. If you haven't had recent vitamin/mineral tests you might want to ask for B, D, K, iron, ferritin, copper and zinc so that you have all the starting data to compare future improvement. You should be able to have it done the same day as your endoscopy. You may have already had them all, but if not you could call on Monday to make sure it happens so that you can remove gluten as soon as your endo is done on Tuesday.

Good Luck :)


Wow, good catch! Yes, I had an awesome three days...it's not like I was instantly cured, but I think in comparison to the way I regularly feel it was pretty great! :) And no, the only test he ordered was the Transglutaminase test.

I doubt they'll answer on Monday as it's a holiday, but I'll call first thing Tuesday morning before I go to get my blood drawn. Might as well get pricked only once, right?

Thanks to everyone who responded, especially the notes on helping newbies navigate this glutened world.

Have a great, gluten-free weekend!
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#8 ivy light

 
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Posted 06 September 2012 - 03:40 PM

I don't even know what to write. My endoscopy was on Tuesday and the anesthesiologist gave me Lidocaine (sp?) before I even got a chance to talk to the GI doing the scope. So I was a bit out of it, but I managed to ask how many biopsies he would do and he said 4 was their "standard."

Well I called yesterday and got them to rush things and now I've got my results: my intestines are normal. No sign of Celiac. Still haven't done the TTG blood test as lining up childcare isn't easy and I'm not very good about getting blood drawn.

I am devastated. No one cares. No one is rushing this unless I rush them. Anyone with a brain and an internet connection knows that you have to do multiple biopsies for Celiac. I've read that 8 to 12 are recommended. There is one nurse who seems to have taken an interest in me and will talk to the dr and call me tomorrow.

I don't even care anymore.
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#9 sa1937

 
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Posted 07 September 2012 - 06:20 AM

I don't even know what to write. My endoscopy was on Tuesday and the anesthesiologist gave me Lidocaine (sp?) before I even got a chance to talk to the GI doing the scope. So I was a bit out of it, but I managed to ask how many biopsies he would do and he said 4 was their "standard."

Well I called yesterday and got them to rush things and now I've got my results: my intestines are normal. No sign of Celiac. Still haven't done the TTG blood test as lining up childcare isn't easy and I'm not very good about getting blood drawn.

I am devastated. No one cares. No one is rushing this unless I rush them. Anyone with a brain and an internet connection knows that you have to do multiple biopsies for Celiac. I've read that 8 to 12 are recommended. There is one nurse who seems to have taken an interest in me and will talk to the dr and call me tomorrow.

I don't even care anymore.

My GI took 6 biopsies and one of those was tested for H.pylori. At that time I had not even heard that 8 to 12 were recommended (I read that on here much later).

Since the samples are sent to the lab for a pathologist to examine them, it took me much longer to get the test results but because I had already had the blood work done, I went gluten-free the day of my endoscopy. Be sure you pick up a copy of the actual pathology report when you meet with your GI.

Let us know what you find out today when the nurse calls back. I know how frustrating it is to play the waiting game. I hope you can get the blood work done soon and then you can go gluten-free.
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Sylvia
Positive Celiac Blood Panel - Dec., 2009
Endoscopy with Positive Biopsy - April 9, 2010
Gluten Free - April 9, 2010

#10 ivy light

 
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Posted 07 September 2012 - 02:16 PM

My GI took 6 biopsies and one of those was tested for H.pylori. At that time I had not even heard that 8 to 12 were recommended (I read that on here much later).

Since the samples are sent to the lab for a pathologist to examine them, it took me much longer to get the test results but because I had already had the blood work done, I went gluten-free the day of my endoscopy. Be sure you pick up a copy of the actual pathology report when you meet with your GI.

Let us know what you find out today when the nurse calls back. I know how frustrating it is to play the waiting game. I hope you can get the blood work done soon and then you can go gluten-free.


The dr and nurses haven't mentioned H. pylori, I guess I'll have to research it myself. Thankfully the lab is open on Saturdays, so that's what I'll be doing tomorrow. Then I'm going gluten-free. I tried to get a diagnosis, he sent me for the TTG (that's tomorrow) and an endo. THEN he called me this morning and said he "didn't realize" that I had bleeding and wants to schedule a colonoscopy. Well it would have been way too convenient to do both at the same time, don't you think? So I scheduled the colonoscopy, thought about it, cancelled it...and here we are.

I tried to do this the right way, I tried to get a diagnosis, I called and made appointments, I had to keep harassing them to get the SOONEST appointments (um hello? Bleeding diarrhea here?), and now it's "gee whiz, let's do another invasive procedure that won't tell us anything except that you have inflammation!" Then I can get misdiagnosed again. Yay!

So that's the plan. Get the TTG done tomorrow, maybe I can get my PCP to order the full Celiac panel, and then I'm going gluten-free. No wonder this disease is so misdiagnosed/under-diagnosed.

Dear Medical Community,
Thanks for nothing.

-A Celiac Sufferer
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#11 nvsmom

 
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Posted 08 September 2012 - 06:37 PM

(((hugs))) Hang in there. You'll get them sorted out in the end.

Best wishes.
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Nicole Posted Image

"Acceptance is the key to happiness."

ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012

CANADIAN

Celiac.com - Celiac Disease Board Moderator

#12 Marilyn R

 
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Posted 08 September 2012 - 07:49 PM

Really sorry to say that the medical establishment really lacks (ok, sucks) when it comes to celiac disease. Hope you're okay. You tried to do everythng right. Keep us postted.
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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#13 Marilyn R

 
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Posted 10 September 2012 - 11:04 PM

I was told by my the head RN at the Surgery Center that I was really lucky I had the Gastro I chose. She said every other GI in town would have scheduled my upper and lower on separate days to maximize rembusement. There is soy in Lidocaine too. Nasty stuff.

If you're bleeding from the rectum, it would be a good idea to have a colonoscapy IMHO. Sorry a lot. It will probably be quicker and less hassle to see the original dr. vs. seeking a new one. You can chew him a new one at the time of your choosing. Might be good to wait until after the procedure.

Meantime, going gluten-free won't disrupt your test results for a colonoscopy. I hope you feel better soon!
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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#14 ivy light

 
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Posted 11 September 2012 - 02:08 PM

Yeah, I'm still pretty annoyed about having to go under again for a colonoscopy. I did the bloodwork on Saturday morning and I should have the results tomorrow (Wednesday). I've been trying to go gluten free, but it doesn't seem to be helping this time. The rash now appears daily, but it doesn't look like the pics of DH I've seen online. It's just an itchy, patchy redness that goes along both arms, my entire torso, and my knees.

I'm so tired and discouraged. I'm praying that the TTG will provide an answer tomorrow.
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#15 pricklypear1971

 
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Posted 11 September 2012 - 02:38 PM

Yeah, I'm still pretty annoyed about having to go under again for a colonoscopy. I did the bloodwork on Saturday morning and I should have the results tomorrow (Wednesday). I've been trying to go gluten free, but it doesn't seem to be helping this time. The rash now appears daily, but it doesn't look like the pics of DH I've seen online. It's just an itchy, patchy redness that goes along both arms, my entire torso, and my knees.

I'm so tired and discouraged. I'm praying that the TTG will provide an answer tomorrow.



Do not judge if you have DH by pictures of others rashes.

Judge it by your reaction to gluten. If gluten makes it flare, that's a strong sign. If you are sensitive to iodine (meaning ingesting iodine makes it flare) that's another sign. Theoretically, a biopsy is the best bet (better to do it on gluten and quickly if you are going off).

Gluten can cause many different skin reactions, judging by what we see on the board. It may or may not be DH.

But don't judge it by how it looks, just my $0.02.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!




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