dlp252

Wow, I still feel disoriented from the anesthesia!

He said I have to call him Thursday for pathology results.. and that my esophagus looked pretty red and run down. Aw!

That was one of the weirdest experiences of my life.. when I woke up, I thought I was drunk.. I couldn't move right or see straight. Never had anesthesia before.. didn't know what to expect!

Whew, glad that's over!

Wow, were you aware at all of what was going on during the procedure...I don't think I'll be all the way out although I almost wish I were, lol.

Donna,

How funny! I just saw the same GI doc today. When I changed insurance and got out of Kaiser I went to camino medical group since my mom goes there and I went there when I was a kid. I got a referral to the GI cuz of my c-diff dx and also cuz my grandmother died of colon cancer at 45 and I've never had a colonoscopy yet.

I really liked him (cant say his name though). I didnt go there because of Celiac but we talked about it. Personally. I dont believe I have Celiac but he pretty much told me the same thing as my last GI and my HealthNow doctor....he said that since my bloodtest was 2 weeks into the diet and my biopsy 6 months into the diet...there is no way to know for sure. He thinks I could have Celiac but he said it doesnt matter what I choose to call it and it doesnt matter what the results of the test are. The main thing is that I improved from the diet. Even though I'm still having problems he said clearly gluten wasnt good for me and when something is not good for you you need to avoid it...regardless of what the tests say. OK...I can agree with that.

He wanted to order the full panel but I told him its kind of pointless since I've been off gluten almost 1 year now. He wanted to order it anyway. I told him the one test I'm really interested in is the total IgA since that was never run. I only had Anti-gliadin IgA and tTG (IgA).

He actually had never heard of the total serum IgA for Celiac and he didnt intend on ordering it *but* unlike my previous arrogant doctors who didnt like to be *told* anything...he called the lab right then and there to ask about the test. It ended up taking awhile for them to get it all figured out but in the end I got the full Celiac panel w/ the total IgA.

He was very nice, he listened, he was cooperative and he was thorough. I cant complain. I mentioned my Enterolab results and he said he's had other patients who have gotten the stool tests (I'm assuming he's thinking of you) and he does not believe in them. He said there is no evidence that they are valid and he simply doesnt believe in them. That doesnt surprise me at all...I would have been more surprised if he told me something different. Oh well...overall it was a good visit...I didnt get into all my lingering problems cuz basically I just wanted to get scheduled for the colonoscopy. I'm still counting on HealthNow for the other stuff.

He told me the C-Diff could have just been there w/out making me sick. He said since I didnt have any change after the antibiotics he thinks it wasnt making me sick. He just said it was good that I took the antibiotics because at some point it could have caused problems if it wasnt now. I still dont know if the c-diff is gone...I have to retest next week. All I know is I feel the same as before I took the antibiotics.

Anyways I would recommend him to anyone looking for a GI...he was very nice.

WOW, how weird, lol! I've heard so many people lately recommend Camino--people at work, people at church, my cousin, lol. My colonoscopy/endoscopy is on Monday, I'm anxious to see what it all shows. I haven't received a report yet on the exact tests they did with the Celiac panel, but I'm betting since he told you he hadn't hear of the IgA, that it wasn't run on me. I've asked them to send the report anyway. The internist said I don't have C.Diff, but I'm thinking I may have H.Pylori, we'll see.

Today so far:

Breakfast: Banana pancakes (just banana and egg), scrambled egg

Snack: lean hamburger patty with "glazed" carrots (glaze is a touch of honey), tea w/honey

Lunch: lean hamburger patty with green beans, more tea w/honey

Later on:

Dinner: Chicken thighs with pureed squash, apple cider

Snack: Banana, and something...maybe another chicken thigh

Ah, thank you very much Yes, you guys are right.. I'll be good, wait it out. A walk is a great idea!

Oye.. nervous.

Thanks again

Glad you decided to stick it out! I'll be going through the same thing next Monday, so I think I'll borrow the walk idea!

With SCD, the awful gas that I sometimes get lets me know that I was not ready to try the food I ate, so it is bad, but at least I know...

Out of curiosity, how soon do you get the gas after you've eating something you weren't ready for? I've had some gas, but it isn't awful. I'm just trying to figure out if it's just a normal kind of gas from a bit more fiber or something else, lol.

Oh Yikes! Okay, George Forman it is then.

Dani - you may be on to something with the grease. I was frying all my stuff before I started SCD, but decided to use my George Forman grill for SCD...I got lazy the other day and just threw the stuff in a frying pan, so that may have something to do with it. For you it may cause bloating, for me the big D, lol.

Laura, I know what you mean. Some friends wanted to go out to lunch last Sunday and at first I said no, but they convinced me. There wasn't much on the menu I could have, so I ended up having a big steak...nothing else, lol. I asked if they had carrots, but the waitress said no only broccoli, so I just had the steak.

I'm thinking the diet will get easier the longer we're on it, for a couple of reasons...first, we'll be used to it, lol, and second there will be more types of food available.

I think you'd be safe to add another meat. I'm trying buffalo today, lol. I should probably wait til the D goes away, but it may never go away, lol, and meats don't seem to give me problems.

You could ask for a plain unseasoned piece of chicken and well steamed veggies. I've been trying to follow the pecanbread "order" of adding back foods for no other reason than to just give me some idea of what to add first...I'll go get the link and post it.

Here's the link:

Open Original Shared Link

Dizziness. I'll be sitting here at my desk and all of a sudden feel like I'm going to fall out of my chair.

The second most annoying is the diarrhea.

I am really sorry if this question has been addressed in previous posts on this topic, which is AWESOME. But I really didn't want to go through 126 of them!! :-)

I haven't received the book The Vicious cycle and I am on the intro diet, which has been going good. However, I need a good probiotic that is allowed on SCD.

The question is this:

What brand of Probiotic are you using that is allowed on SCD?

Thanks for your help!

I'm still looking, lol. The two I've been taking both have potato or rice starch I think, so those wouldn't be allowed.

***

On a different note...I'm having major D today, lol. I was so hungry yesterday again and it was one of those days where I was on the go from 4:00 a.m. to 9:30 p.m. I had some stuff which is legal, but I just don't think I should have had them yet. I had a Lara bar which has legal ingredients, but it's all raw, so probably wasn't a good idea...then I was so hungry when I got home at 9:15 that I had to have something before bed, so I had some almond butter... egads, lol. Think I'm paying for it now. I also put a little orange juice in my carrots last night and I think I've discovered that I just can't have orange juice.

Um - the foul gas is gone too. I'm doing a 4 day backcountry ski trip in a week and my cabin mates will certainly appreciate that.

I'm a little nervous about the food for the trip, but the outfitter is taking our packs in by snowmobile and said that I could put an extra duffle bag of food on the sled. We'll be cooking over a woodstove so I think I'll make up and freeze some chicken soup, zucchini and carrots in portions ahead of time and can just add those to a pot. No problem with refrigeration with lots of snowbanks outside the cabin so I'll take some burgers and avocados too. Biggest problem will be lunches, but I'm thinking of bringing a widemouth thermos and warming up soup + putting that in it in the mornings before we head out skiing.

Ha, me too...I still have gas but I don't think anyone has to leave the state anymore, lol.

Wow, your trip sounds great and I think you have some great ideas!!! Nice hot soup will be great there.

Hi Amy, I decided to post it here...I guess that's okay. His name is Sanjay Ramrakhiani (pronounced ram-rock-eee-an-eee), with Camino Medical Group. A co-worker of mine recommended him for the colonoscopy so I was pleasantly surprised that he seemed to have the right things to say about Celiac--it was a nice bonus.

ETA: My next course of action if this didn't/doesn't work out is the clinic that Rachel goes to.

Also forgot to mention his office is in Sunnyvale.

...

Anyway, do you, or anyone know if you can retain water in your legs? Because when I retain water, not only does my stomach pertrude out like 10ft. (haha, okay a little sarcasim), but I feel like my thighs are also very puffy. Maybe it's just in my head, but I just don't feel like myself when I'm bloated. Ugh....

Oh and Donna, I told you about the pearl acidopholis pills. Don't get them. There is pectin in them, an additive that isn't allowed, and I didn't know until yesterday. I was taking them, so I could be having problems from that, too.

But yeah, this diet is hard when we don't have Elaine to call or write like people could do when she was 'around'. I wonder if someone took her place that we could write to.......?

I have retained water in my legs too from time to time. I hate that bloated feeling. Fortunately I don't get it a lot, but will definitely get it from too many carbs. The juice thing could have done it for you.

Glad you told me about the pearls, lol. After reading so many labels last Saturday I don't know that I would have this time, lol.

If I have time later I'll look more around to see if I can find someplace to ask questions.

dlp252--That sounds great! Think of all the combinations! I will be trying your idea in my food processor. I would think that adding a banana in would create a little creaminess.

Hum, I haven't tried with banana...that would be good too I think. I did used to make it with protein powder too, but sometimes that's a bit gritty.

One idea for a sort of ice cream substitute is what I do...I put some frozen fruit (I just buy packages of frozen fruit without sugar added), and put that in a blender (I use a Magic Bullet) with a little juice. It makes a sorbet which is really pretty good. Sometimes depending on the fruit I might add 1 package of Spenda (pre SCD days, now I'd add a bit of honey). It took me a couple of trys before I kind of got the correct ratio of juice to fruit.

Not as creamy of course, but satisfies when I want something like ice cream...fortunately I love sorbet too.

Wow, I'm so sorry you have to go through this...not only the pain but the frustration and helplessness. Big cyber hugs!! {{{{{hugs}}}}}

Hi everyone on the SCD diet.

Well, if you're out there right now, I have a concern. I had problems with something that I ate on Saturday night. So, for the past four days, I have had nothing but juice/water, homemade chicken soup, carrots, and hamburger pattys, homemade of course. And although the gas has stopped, my stomach is still HUGE. I mean, it's just not going down this time. I don't know if I should add another food in because I don't have pain, or should I stay on the intro. diet until my stomach goes down? Or is this diet not working for me? I'm kind of mad about this. I mean, I look like I'm pregnant, even when I wake up, and I'm not eating anything bad.

Help!

Egads! That's four days already so I think it would be safe to add another food but I think I'd make sure it was really easily digestible. I've been having D again, but I tried pears last night anyway...I poached them (I guess that's what it's called) in a little diluted grape juice. It's so darned hard to know when to add stuff isn't it!? I think in the book she said to give it a month...and in fact I think I remember reading that even after that there will be setbacks. It's hard not to get discouraged though.

So what is the improvement, if any, that you have seen so far? ( For everyone doing the SCD and reading this. )

I'm eating lots of beef too, and love it too. Hum, I think the improvement is that my BMs are a little more normal. Eventhough D came back today, it has been pretty "normal". Outside of that, I don't know if I can pin it down specifically to SCD. I've been feeling pretty energtic--I was feeling pretty sluggish there for a while. The first few days of the diet I was hungry all the time (actually before I started too, but really really hungry the first two days of the diet), but my appetite seems to have leveled out and I'm now actually eating less, so I guess that's an improvement. I'm not craving food...now that I think of it THAT is a MAJOR improvement, lol. All that gluten-free junk food was causing havoc with just about everything for me, lol.

Donna, I'm jealous you're doing so well! I'm practically still on the same diet I started with. I've added apples and mangos, but haven't tried anything new yet. My stomach is not back to normal yet from my 'raw' incident on Saturday.

Don't be too jealous, lol. I'm still basically where I was, and D came back today (hopefully from the orange juice). My diet still consists of chicken, beef, carrots, green beans, apple cider, grape juice, and if I could make my own mayo work, tuna.

I long for peanut butter, lol. I think I can add that soon. I tried adding orange juice, but I think that didn't sit well. Green beans are okay, so I think I'm nearly ready for the next round, which is nut butters, YAY.

My adventure last night was ketchup. I wasn't pretty, lol. I am SOOOOOO not a cook. It only has a couple of ingredients, how can anyone mess that up, lol. It tastes pretty good, but it never got thick. I boiled that puppy for hours (okay, really only 2), and it never got thick, so I just threw in come honey and called it a night. I did use some on my hamburger patty this morning...it is tastey.

Did I mention my try at mayo. I can't try that again until I buy more oil.

I'm going to seen a GI on the 20th for a pre-consult for a colonoscopy. My Internist wants me to tell him about my gluten intolerance. If he turns out to be knowledgeable I'll post back.

I'm quoting myself, lol. I saw the GI yesterday who seems very promising. I should mention that I went to see him for a colonoscopy preconsult, so it wasn't directly about Celiac, but my Internist wanted me to mention it to him (by-the-way, the Internist didn't find the gluten intolerance either).

First of all the doctors I've seen in this group (Internist, Ear/Nose/Throat, Audiology and now GI) actually listen to you (even if it seems they aren't, lol), and they put everything into the computer, which every other doctor in the Group has access to. All the results of the tests they run are in there too. So if one doctor prescribes something, or diagnoses something, all the other doctors can pull up your chart and see it. So the GI already had a history of my self-diagnosis of gluten intolerance and the fact that my sinus problems are improved since going gluten-free (thanks to the ENT who put that in the record). I said something about not being diagnosed in the traditional way and he said he thought the dietary test was a valid method. Wow. Okay, cool.

He also didn't scoff at my Enterolab report...I don't know that he agrees that it is a valid method of testing, but he didn't scoff or discount it completely.

But, here's what really made me think he might know his stuff. He said we could do a blood test to test for Celiac, and I said that I had been gluten free since November and he said "hum, it probably won't show anything then, but we can take it for a baseline reading." Huh. Great!

Since I'm already scheduled for a colonoscopy he said we could do an endoscopy the same day to look for damage to my esophagus from GERD, and he said while he was in there he could take some biopsies to check for villi damage, even though it probably won't show anything. Wow again.

He thinks I have IBS and GERD but those would be in ADDITION to the gluten intolerance. The last comment he made was about taking a fiber supplement because he doesn't think I am getting enough from fruits and veggies, so he said I should take Benefiber, which he thinks is safe for people with gluten intolerance. Okay, I'm sold, lol. (P.S. I don't know for a fact that Benefiber is or isn't safe for Celiac, but just the fact that he mentioned it floored me, lol.)

So, after all that if you still need the name of a doctor let me know and I'll PM you.

This confused me when I first started posting as well. Until a moderator sees your post and "pins" it it goes to the very back of the posts for that discussion board. It usually doesn't take too long for it to get pinned. Until it does you can hit "new posts" and it should show up on that list.

Oh yeah, another question. Is anyone loosing or gaining weight on this diet? I seem to stay the same, so far at least. Just curioius.

I've lost a couple of pounds. That's good since I'd gained about 7 pounds from binging on gluten-free junk food. I'm one of those gluten-intolerant people who is not underweight, but not heavy either.

Ok so he put me on Keflex, but he said that I really dont need a probiotic...hmmm not sure what to do now...

Wow, your original post could have been written by me only we've (my now retired ENT/Allergist and I) been trying to figure out what's wrong for almost 4 years! I has some type of respiratory infection just about every 6 weeks. He gave me ever increasing dosages (until I was up to 4000mg per day) of antibiotics each and every time plus prednisone. Those always cleared up the infection (at least in the beginning), but I really believe they created a sort of cycle. I've also never had yeast infections. We explored several theories on the increase infections, including candida and low thyroid...we didn't get around to Celiac, but may have if he hadn't retired. Anyway, he told me a good reputable probiotic was a good idea. He also said I could eat yogurt, which I did, but can't now because of the casein intolerance.

I just kind of take the probiotic all the time really.