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Not What I Expected
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19 posts in this topic

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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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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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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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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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.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Dessert thread

Easy yummy bread in minutes

How bad is cheating?

Short temper thread

Non celiac wheat sensitivity article

http://www.nature.com/ajg/journal/vaop/ncurrent/full/ajg2012236a.html

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

Best wishes.

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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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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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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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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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I want to thank all of you again for all your help!

I went back to the dr and he convinced me that it is NOT Celiac. And I believed him enough to go through with the colonoscopy today. Well I have Ulcerative Colitis. He says it's treatable with medication...unfortunately when my husband and I went to pick up the meds on our way home, we found out that our insurance won't cover the Lialda! So there's some hoops to jump through.

I have a follow up with my dr next week and need to ask about H. pylori then.

I really appreciate you all being here for me through all this. I guess I need to find a forum about UC that is as awesome as this one! :)

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I want to thank all of you again for all your help!

I went back to the dr and he convinced me that it is NOT Celiac. And I believed him enough to go through with the colonoscopy today. Well I have Ulcerative Colitis. He says it's treatable with medication...unfortunately when my husband and I went to pick up the meds on our way home, we found out that our insurance won't cover the Lialda! So there's some hoops to jump through.

I have a follow up with my dr next week and need to ask about H. pylori then.

I really appreciate you all being here for me through all this. I guess I need to find a forum about UC that is as awesome as this one! :)

Well, at least you can eat whatever you want and ulcerative colitis can go into remission for decades (I have a friend whos aunt has crohns, same thing except different areas and she has been in remission since 17, shes 37.) What was your ttg score by the way? What lead you to think it was celiac more so than other issues?

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Well, at least you can eat whatever you want and ulcerative colitis can go into remission for decades (I have a friend whos aunt has crohns, same thing except different areas and she has been in remission since 17, shes 37.) What was your ttg score by the way? What lead you to think it was celiac more so than other issues?

I forgot to ask for a copy of my TTG. He said it was normal and I think another nurse told me it was negative.

Part of the reason is because I went gluten free again after my bloodwork and didn't notice a difference. Part of it is that I've had the diarrhea since I was 14, but it's always been on & off. Also, I got some pictures from my colonoscopy and you can actually SEE the inflammation! And they already did the endoscopy and found nothing there.

I'll keep you all updated. It's been such a LONG journey and I hope all of you get answers and start feeling better soon!

One funny tidbit: after the colonoscopy, the dr told me about the meds he wanted to put me on & I asked how soon I could expect them to take effect. He said that I "could be back to normal as soon as 3-4 days." I looked at him and totally dead-panned, "What's 'normal' like?"

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"normal" and "negative" mean the same thing in a tTG blood test

Glad you got an answer and hope you heal very quickly!

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    • You're welcome! Yes, I too, hate waiting for lab results. Ugh!
    • I understand this is not a doctor's office and that I need proper testing done to rule out Celiac disease, however, I am stuck waiting until November to even see a GI doctor. So I need some suggestions soon on which test to go for first and what to do as I wait. Also do note, I am 28 years old.

      Right now, the most suspecting culprits to my symptoms have been Gallbadder, Celiac disease, and IBS. I have also been recently diagnosed with pre-diabetes and I am obese.  My Ultrasound and CT scan have all come up as normal and no signs of gallstones. However, I was in extreme pain as my upper abdomen was examined during the ultra sound. My white blood cell count also seems to be high at 12,000 but all blood work came back normal for liver and everything else.

      Symptoms included are: diarrhea
      yellow-stools (Sometimes foul smelling but always sink)
      light gnawing pain in area a few inches above belly button
      burning in chest
      sometimes pain below upper right rib cage.
      Tenderness all around the upper abdomen, but more so on the right and center.
      burping frequently after meals
      Gassy
      bloating in abdomen The pains used to come and go for the past few years as something very mild, but then the yellow stools happen at least four months ago and at a constant rate. Everyday it is either yellow or orange.  Sometimes the stools are lose and other times they are not. Two months in, I was finally diagnosed with pre-diabetes and have been having a strict low calorie and non fatty diet.

      So far the upper right pain has subsided but the pain above my belly button would continue. The gassy and bloated feeling would come and go as well. I get severe heart burn after almost every meal. But I felt it especially after eating whole wheat sandwiches or whole wheat pasta. I however don't feel it when I eat a Nature Valley granola bar, or pack of peanut butter crackers. I also had a chicken and vegetable stir fry with soy sauce cooked in that also had little effect on me. A bowl of cereal also made the heart burn act up pretty bad. I sometimes feel numb or light headed after various meals. Especially larger ones. In fact, it seems the more I eat, the worse I feel. But the less in the stomach, the more the pain above my belly button starts to act up.

      It is usually in the morning and afternoon I feel the most with gas and bloating. Especially after any large meals from the previous day. Despite the diet and work outs I have had, nothing has changed the stools. However, taking fish oil pills has greatly reduced the pain in my upper abdomen as well as the pain  in the the area above my belly button. My question now is, is there a very likely chance of this being celiac disease? Should I go on a gluten free diet to test since I Have to wait so long? Also, which test should I ask the doctor for first, as it will take a GREAT deal of time to pay off each one. Colonoscopy, HIDA scan, or endoscopy. 

      Again, I understand this isn't a site to get compete medical advice or to know exactly what my illness is, but I am trying to narrow down the possibility or what is most likely. If this has a chance of being celiac disease, I would rather know sooner than later.
    • Thank you very much for all the info Squirmingitch. The doctor told me as we were talking he was going to order some tests with urine so I don't know why he didn't mark that. Maybe he forgot as we were talking? Duly noted about the bladder Cancer to watch out for too. Doctor said it will take about a week to get the lab results back usually from this lab. The wait will seem like forever I'm sure. Yes I will press to have the other tests done too if this one comes back negative.
    • http://www.cureceliacdisease.org/screening/ Was your hubs tested for total IgA to see if he's IgA deficient? Read this thread: http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/83660
    • Yes, bone density problems are all part of the celiac "umbrella" so to speak and yes, osteoporosis tends to happen more rapidly and at earlier ages than normal when malabsorption is happening. At age 43, it's not normal to have osteoporosis as you describe so that's another part of the jigsaw puzzle. Time to receive blood test results back from the doc are entirely dependent on the particular lab they were sent to. Yep, it's time for you to start keeping a very close check on the PSA in light of your father having had prostrate cancer. I would think you should get a PSA every year. I really would have liked to see him do a urinalysis. With the prostrate cancer your father had, it would seem a close watch should be kept on you for bladder cancer as well. The first symptom of that is blood in the urine but it's generally microscopic before you're ever able to actually see it. That happens to be the 8th most common cancer in men & it's moving up in the rankings. I know this because my hubs had it. The good news is that it's also one of the easiest and most successfully treated provided it's caught early. Certainly starting @ age 50, men should see a urologist every year. BTW, in the last year before I found out I was celiac, I turned up with microscopic blood in my urine. I got it checked out thoroughly since I know about bladder cancer & all tests, ultrasounds, cystoscopy, CT scan etc... turned out fine. The docs were stumped & finally said, "apparently that's just what your body does". Guess what? That's not "just" what MY body does. Once I went gluten-free, I have had no more microscopic blood in my urine. Interesting eh? Before now I didn't realize you are in Canada. The doc didn't do the full celiac panel but I understand the initial screening protocols in Canada only order the TTG but if that comes back negative be sure & press for the full panel as cyclinglady said. We have several here who tested like cyclinglady so it's not a rare thing, it's just not the norm. I'm glad he's doing the B-12 & Ferritin -- those can be big clues.
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