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toomuchagony

New To Celiac, New To This Forum Posting Thing, Try 1 Question To See How To

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Hello, greetings to all here!

I am new, to both the possibilty of having celiac disease and to using forums, so thought before I try to make a longer post including my symptoms, history, testing, etc here that I'd just try one 2 part question and make that a good one as an experimental "post"... (hope that is okay eh ;o)

Okay, my question is: Apart from the gluten-free diet, elimination diet methodology overall (which am doing and I did get my blood tests taken on Monday Mar 10/06 and am awaiting results anxiously now) I'm absolutely TERRIFIED to "eat anything" as I'm really just in too much agony it seems from everything so is there "any one food" which could be recommended to try to eat which would have NO possiblity (or at least minimal possibility) that any one would EVER react to? Or is it okay as I am certainly inclined to do at this point to "simply fast and eat nothing for a couple days until I can start to heal from the ingested gluten I had for the testing to be less likely "false negative" (got REAL sick from it!)

Thank you in advance for any help, so very sorry if I have done anything incorrect here now, please just inform me if so, I take both "criticisim and correction" very well ;o)

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Hello, and welcome!!

Boy, do I feel your pain. Just from observing the posts of others in this forum, I wouldn't, unfortunately, recommend any one "superfood" that absolutely anyone and everyone can tolerate - there are far too many individual variations; we all react differently to different things. Having said THAT, I have been reading the thread discussing the Specific Carbohydrates Diet, which appears to have had really good results for many people with Celiac/other various gut problems. Give it a Google, see what you think - you'll find you'll be asked to eliminate a LOT, but what do you have to lose?

*hugs*

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Hello, and welcome!!

Boy, do I feel your pain. Just from observing the posts of others in this forum, I wouldn't, unfortunately, recommend any one "superfood" that absolutely anyone and everyone can tolerate - there are far too many individual variations; we all react differently to different things. Having said THAT, I have been reading the thread discussing the Specific Carbohydrates Diet, which appears to have had really good results for many people with Celiac/other various gut problems. Give it a Google, see what you think - you'll find you'll be asked to eliminate a LOT, but what do you have to lose?

*hugs*

Thank you for reply.... YES will google immediately after my HOT bath... (not sure why but while I am in the hot tub my terrible stomch cramping subsides? (just until I get out, wish I were a fish just now!)

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Just about any "whole" food -- fresh fruit, vegetables, meat (unprocessed), fish, rice and potato (a veggie, I know) should be safe and will help get you through the initial phase of going gluten free. After a while you can probably add dairy.

I've spent a lot of days and nights rolling on the floor with stomach cramps and know just what you're going through! Take heart, it does pass.

Sue


Self-diagnosed in 2004 after 6 years of hell. Doing well on gluten-free diet, but still having occasional bouts of accidental glutening. Message board has been a godsend. Have been on since 2004 as "grannynanny," but couldn't recreate password and was shut out, having to re-register in 2007. Update: Gastroenterologist wanted to do genetic test for celiac (Mar 2008). Results showed genetic marker on G8 -- one of two genes identified as Celiac.

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Just about any "whole" food -- fresh fruit, vegetables, meat (unprocessed), fish, rice and potato (a veggie, I know) should be safe and will help get you through the initial phase of going gluten free. After a while you can probably add dairy.

I've spent a lot of days and nights rolling on the floor with stomach cramps and know just what you're going through! Take heart, it does pass.

Sue

Hello Sue (The Lovebug) - gee which name are we supposed to use here? :blink:

Thanks for replying... I am gonna "post" a new topic this evening to properly introduce myself and share what /all that is really going on with me, it is a LOT (it seems not so unusually around here ;o) Until then what I'm about to write may not make complete or accurate picture for anyone, please be patient with my posting, unfortunately it is difficult to even "sit up here to type/think" due the PAIN so I need to keep "lying down reclining in a HOT bath every so often" which ???? eliminates the extreme cramping I am currently suffering, whilst I am within the tub water, (but it must be the heat somehow, as lying down on my back outside of a hot tub causes me to experience even more gas! Incredible to me that is even possible at all (more gas eh ;o)

But meantime... just wanted to pass along for now, yesterday I ate "a few grapes", and "2 sml pork chops fried in olive oil, and "fried in same (new btw too) pan with pork chops, canned sliced potatoes" during the "ingestion" of the food, I had excruciating "upper stomach" cramps (located at the base of my rib cage my diaphram area I think) that came upon me and I was having to belch "during my bite chewing" extensively to try to eliminate the extreme gas (I ALWAYS have), none the less, I persisted to "finish the meal", and by the end of it the cramps had drastically lessened, but the unending gas & discomfort remained all evening long, (through the eve I did have 2 doses of both "fennel gripe water & peppermint oil" which helps some with the gas pain, and had taken several "Rolaids and a couple of Gaviscon", but definetly (by degree to the day before) I thought I was truly "feeling better", however MUCH to my shigrin, at 1:30 am (a typical time for an attack for me btw) SEVERE "abdominal cramps" (which occur lower than earlier "eating cramps" basically all over my abdomonial area & lower back) began "just as I had evenings prior" and I was up cramping until 5:20 this morning, when I finally did fall asleep (sitting up propped on couch), when I awoke at 10 am, I had no more cramps, but still had the same never abating GAS, and had a large D movement, and now I find that after last night's pain, I am absolutely terrified to eat at all and yet petrified that doing that would/could (unbelievably) make me get even worse than I am. I know I have to eat... but what... with the endless possibilities just yet of what I "may" be reacting to which are discussed here at this forum and me still awaiting a "firm diagnosis from my blood tests" (God I pray!) well gee, I'm just desperate to "get my cramping to stop & sleep". ANY suggestions are tremendously appreciated, and as I said I promise I will overcome my discomfort in order to accomplish a more informative post to this forum by end of this evening.

I am very glad to find this forum... at least knowing that so so many people "suffer" like I do and they DO actually survive and not DIE from the agony, is both inspiring and comforting in itself. Thanks all.

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Babyfood can be helpful. Low fat, bland and non irritating :) . Chicken baby food mixed with white rice is nice a bland and soothing. Have you had a HIDA scan already? Is your doctor unwilling to manage your pain? You have a right to decent pain management, there are perfectly good meds that can help you during this time. Hope things get better for you soon.


I don't eat gluten and neither do my cats

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[

I have also heard (and tried myself) that applesauce/stewed apples are very easy on the gut and have a low intolerance level..


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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I wish there was a gluten free version of the Gastrointestinal II diet. That is the diet for people who have problems with their digestive tract-soft bland food. Only problem is half of it is white bread :(

The general idea is sound, just take the gluten out

http://www.fhcrc.org/science/clinical/ltfu...t/g_diet_2.html

Is there a dietician somewhere who has alread come up with a gluten free version of this helpful transitional diet and I missed it?


I don't eat gluten and neither do my cats

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Babyfood can be helpful. Low fat, bland and non irritating :) . Chicken baby food mixed with white rice is nice a bland and soothing. Have you had a HIDA scan already? Is your doctor unwilling to manage your pain? You have a right to decent pain management, there are perfectly good meds that can help you during this time. Hope things get better for you soon.

Thanks itchygirl for yer input... I do NOT know what an HIDA scan is, can ya clarify this for me? And as regards "the pain management meds"... "what are ya referring to exactly" (it happens as I've explained in my recent much longer post, I have Degenerative Disc Disease and suffer chronic pain that I take powerful narcotic painkillers for already, but unfortunately they are not helping with this type of pain at all I find) so do ya perhaps mean some other type of pain management meds? I am certain that "if I ask my Dr" then he will give me whatever I want to try for relief. Least I'd hope eh!

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I wish there was a gluten free version of the Gastrointestinal II diet. That is the diet for people who have problems with their digestive tract-soft bland food. Only problem is half of it is white bread :(

The general idea is sound, just take the gluten out

http://www.fhcrc.org/science/clinical/ltfu...t/g_diet_2.html

Is there a dietician somewhere who has alread come up with a gluten free version of this helpful transitional diet and I missed it?

Checked out the link itchygirl... BUT right now it looks tooooooo SCARY for me to try to sort out! I did notice at a glance that it has listed several "dairy & vegies" which I think might increase my gas just now, and truly the last thing I need fer sure, (they say Rice is the only thing that does not create gas but in my case today, even 1/2 cup of plain white rice caused me same degree of gas & symptoms!) BUT none the less, I have bookmarked the link site so I can revisit after I learn more what to look for regards needed adaptations for my intolerances. Thanks muchly though fer passing it along to me :P

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Thanks Mushroom! Gee happens I rather like "apples" too, I'll definetly pick up some apple sauce!

I'd suggest, instead of ready made apple sauce: cook an apple in the microwave for a couple minutes. That way you only get apple, you can be 100% sure it's gluten free and doesn't have any extra ingredients, and I also find it tastes better! And don't go overboard with too many apples in a day.

Maybe it's an idea to try to keep to very simple ingredient meals for awhile. For example just a little meat with well cooked carrots. Or rice and one sort of vegetable. Don't combine meat and carbs like potato or rice for now because that is heavier to digest.

Pauliina

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Toomuchagony... This is my first time on this forum, so I'm going to make a comment on your entry yesterday, then post my own question/addition to the thread!

You said that you took rolaids... Rolaids is an item that is on the list of things that "may contain small amounts of gluten"!!!!!!! Gluten/starch and things like that are often used as binders in things you wouldn't expect. So go off the rolaids!

My question is that I'm going for a Celiac test myself after being diagnosed with Fibromyalgia recently. There were some incidents that inclined me to try a gluten-free diet, so I had not eaten any gluten for 4 days when I saw my endocrinologist yesterday. She wants me to be tested for celiac, but said I had to resume eating gluten first then get tested on Monday. My question is: since I resumed eating gluten at noon yesterday (24hrs-plus ago), and had only been off gluten for 4 days prior, can I go THIS AFTERNOON to get the celiac test??? I am anxious to try to reclaim my life (I am "working" on a PhD at the moment, and have 2 toddlers), and don't want to delay my new diet any longer than I have to!!! I was already starting to feel a bit more energy!!!

Other things started to add up once I started to research Celiac after visiting my endocrinologist yesterday and doing some web-searching.

1. I have a history of IBS diagnosis (though digestive disorder is not one of my main current complaints, interestingly enough)

2. I have a history of Grave's Disease (autoimmune hyperactive thyroid)

3. History of "bright spots" on a brain MRI that was done while the doc was searching for my Grave's diagnosis... but these spots were never explained. He brought them up again when I asked for an evaluation for fibromyalgia.

4. My daughter was born with a cleft lip... which I've seen can happen with babies of celiacs due to malabsorption of folic acid.

5. I've never been able to drink much beer, and rarely have more than a few sips of my husband's despite liking beer.

6. I have a history of Raynaud's disease

7. For 10 months or so in 1997-1998 I had unexplained horrendous hives... it was AWFUL. The hives disappeared when I left the US and lived in Tanzania for 7 months, where I subsisted mostly on a diet of rice and beans, milk and meat. In fact, when I was just in Tanzania for 3 weeks last Nov-Dec all of my fibromyalgia symptoms completely disappeared and I felt SO GOOD. I was again eating rice, beans, milk, and meat! Symptoms resumed about a week after returning home and I've been very low-function ever since!

Biggest question is that of whether I can go today for my test after just 24 hrs of gluten, or do I really have to wait until Monday??? Arg... Thank you all so much!

Any advice is recommended. Thank you!

Hello Sue (The Lovebug) - gee which name are we supposed to use here? :blink:

But meantime... just wanted to pass along for now, yesterday I ate "a few grapes", and "2 sml pork chops fried in olive oil, and "fried in same (new btw too) pan with pork chops, canned sliced potatoes" during the "ingestion" of the food, I had excruciating "upper stomach" cramps (located at the base of my rib cage my diaphram area I think) that came upon me and I was having to belch "during my bite chewing" extensively to try to eliminate the extreme gas (I ALWAYS have), none the less, I persisted to "finish the meal", and by the end of it the cramps had drastically lessened, but the unending gas & discomfort remained all evening long, (through the eve I did have 2 doses of both "fennel gripe water & peppermint oil" which helps some with the gas pain, and had taken several "Rolaids and a couple of Gaviscon", but definetly (by degree to the day before) I thought I was truly "feeling better", however MUCH to my shigrin, at 1:30 am (a typical time for an attack for me btw) SEVERE "abdominal cramps" (which occur lower than earlier "eating cramps" basically all over my abdomonial area & lower back)...

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I'd suggest, instead of ready made apple sauce: cook an apple in the microwave for a couple minutes. That way you only get apple, you can be 100% sure it's gluten free and doesn't have any extra ingredients, and I also find it tastes better! And don't go overboard with too many apples in a day.

Maybe it's an idea to try to keep to very simple ingredient meals for awhile. For example just a little meat with well cooked carrots. Or rice and one sort of vegetable. Don't combine meat and carbs like potato or rice for now because that is heavier to digest.

Pauliina

Hi and thanks Paulina,

It happens I had in fact "mixed potatoes & meat" the very first gluten free day" after testing! Thanks so much for the tip, hopefully I won't require it much in future, I hope to "avoid accidental gluten" so I don't get such a bad attack occurring now as I go "Gluten Free". I'll also keep the fresh apple idea for my ongoing use of them, and no worry, I could never handle "daily apples", even when I believed the saying that they "kept the Dr away" eh ;)

Well gee eh, I am soooooo happy to be able to say; "it is truly amazing how much differrance a single day can make in the agony of a Celiac sufferer"! Compared to yesterday (late evening), I definetly do feel a good 60% BETTER today! THANK GOD as I was terrified for a sec that "gluten" wasn't gonna be the culprit responsible for my situation, just because I'd had such a "quick" recovery the first time I withdrew it from my body...

Late last night, I took a dose of Peppermint Oil, (AND 4 Rolaids) and I "omitted my Synthroid" for the night (I'll be okay for a couple missed doses then will have to try to take again to see reaction and if reactive seek a change from Dr) and I "propped up sitting on couch", and I actually FELL ASLEEP at around 12:30, and slept right through (with NO waking cramp attack) until 8:00 am... upon my waking up and within a few minutes getting upright and all, I immediately noticed that I felt BETTER... I went and had a "small b movement" which while still D did show evidence of formation occuring of stool) I went right away and made "1 slice of gluten free toast in my new toaster", and I ate 3/4 of it PLAIN, during its ingestion I did have some (minor by degree) "heartburn / cramp / gas" occur, but it was bearable, as soon as I finished I took a dose of my Peppermint Oil and 2 Roliads, and ALLELUA for the most part I remained good and crampless entire morning (and that even though I was stressed this morn due appearing to argue in a Court Case at 11:00 [happily I won that ;) THEN to celebrate I "had lunch" when I got home, just 2 more slices of gluten free toast mind ya, but this time I added on to it a spreading of "Rasberry Jelly", and a full glass of Tropicana Essentials (Omega -3) Juice (I called to see was gluten free, but notably I think I earned another clue for my "tolerances" because there is SOY in product, and no reaction so)! I experienced even less gas and heartburn this time "consuming" the food, and thus far a few hours later I am absolutely thrilled to say, I am STILL CRAMPLESS and certainly do appear to be healing! I do STILL have "gas" but my bloating has decreased and stomach has "softened" quite a bit. It's most assuredly bearable compared to my agony yesterday anyhoo! I'm still "awaiting test results", (called to ask but they haven't got back to me yet today) but regardless of test results and confirmation of "Celiac", I am certain that I'm not eating "gluten" (which it appears is poison for me what ever the reason!) any longer, I can easily "live with" being "gluten free" to avoid having to endure such agony as I've now come to know from this condition! Now I'm glad the Dr did not yet order a "biopsy" because I am not at all inclined at this point to "endure agony" yet even one more time just now, only for them to tell me... "your body hates gluten", maybe after a nice resbit from suffering I'll once again consider undergoing a "purposeful suffering" and get myself "sick" once again, BUT fer now folks... nah I am too BUSY to be sick and so happy when I am not in agony... no matter what my blood shows the Dr I am myself hereby swearing OFF GLUTEN (and maybe a few other things as they might be revealed like dairy which I'll cautiously add (with Lactaid Ultra) in the next couple days, maybe try some "butter on my toast" eh, yum ;) Meanwhile, I'm sticking to Rice & a Carrots, and some cooked fruit for a treat... later I'm going to post a couple questions under new topics, so I begin to learn how to adapt to Celiac/Gluten. I am grateful for you, and for everyone, replying to my post, they are both helpful and encouraging to me. Thanks again.

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Toomuchagony... This is my first time on this forum, so I'm going to make a comment on your entry yesterday, then post my own question/addition to the thread!

You said that you took rolaids... Rolaids is an item that is on the list of things that "may contain small amounts of gluten"!!!!!!! Gluten/starch and things like that are often used as binders in things you wouldn't expect. So go off the rolaids!

My question is that I'm going for a Celiac test myself after being diagnosed with Fibromyalgia recently. There were some incidents that inclined me to try a gluten-free diet, so I had not eaten any gluten for 4 days when I saw my endocrinologist yesterday. She wants me to be tested for celiac, but said I had to resume eating gluten first then get tested on Monday. My question is: since I resumed eating gluten at noon yesterday (24hrs-plus ago), and had only been off gluten for 4 days prior, can I go THIS AFTERNOON to get the celiac test??? I am anxious to try to reclaim my life (I am "working" on a PhD at the moment, and have 2 toddlers), and don't want to delay my new diet any longer than I have to!!! I was already starting to feel a bit more energy!!

Heloo Cheetaah, thanks for replying to my post.... While I am by no means a "mature" enuf Celiac sufferer to even brave attempt to "answer yer questions" in your reply, I did notice ya posted a new topic to ask so hope ya shall get answers there... meanwhile though regards yer comments in this reply to me... particularly regarding the "Rolaids" caution, actually I have researched that online and indeed on this forum prior (here at this link) http://www.glutenfreeforum.com/lofiversion...php/t21485.html

and I do believe that in fact Rolaids "regular" ARE gluten Free, Rolaids 'soft chews" ARE NOT, and also Tums ARE NOT, Gaviscon is (and states it on bottle), and I do know fer sure eh, the Rolaids HELPS me with my primary ongoing symptom of GAS/Heartburn/Bloating to make my existence bearable, I'd have NO hope of any life just now if I stopped treating my gas with Rolaids, it's a good pal to me!

As regards yer testing... all I can share is that myself, I went "gluten free for only 1 and half days" and I am in fact actually concerned that my blood work will prove to be "false negative" for that wee rest! That said, I absolutely can relate to ya NOT wanting to endure suffering the effects to get the tests, I do hope others more experienced here will provide ya with more tangible advice on that and that all shall work out for ya positively all round eh! ;o) Thanks again for replying and sharing yer own plight with me.

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