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Zachm

Recently Diagnosed And Needing Advice

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So about a month and a half, two months ago I was diagnosed by my MD with it from blood tests. Before this, the reason I went in was more of a change in my bowel habits. I used to go once a day in the morning and for five-six months Id go 5 times a day, or sometimes 3 days without going. Recently, even though I have been trying very hard to avoid anything with gluten and only eating gluten free I've had four seperate occassions, AFTER going gluten free where I wake up around 4am and am on the toilet with HORRIBLE SHARP CRAMPS for at least an hour. I am talking about I am a man who never whines about any pain and I seriously have almost cried. I literally get shakes from the pains. WHY is this happening when I am gluten free? I need some advice because its taking a psychological toll on me and I dont get to speak to a GI til October 5th because thats my appointment. Thanks. 

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what are you eating?   how long have you been gluten free?

 

read the newbie 101 locked thread at the top of this section.  it's tricky to be completely gluten free (which is the ONLY way the inflammation in your body will ever subside) but it's manageable.  it just takes a little practice.  when i was diagnosed, i was like, no big deal, i'll just order off the gluten free menu.  i won't eat the cookies, etc.  but it's really the cross contamination that will keep you sick.  so, it's a little (ok, alot) more difficult to eat out safely.  and i don't trust very many people to feed me.  early on, my friend made me some grape leaves (stuffed with rice) and i quizzed her before i accepted some to try.  when i got the container home, i noticed there was a white sauce on them so i called her and said what's in the sauce.  she says, oh, it's a lemon sauce, so, lemon, salt, etc.  i asked about any flour, why, yes, there was flour in it.  but only a little <and only a little will make me sick!!  for two weeks!!)  so, lesson learned.  celiac is a systemic disease, which means it affects your whole body when you take a gluten hit.  i get a lovely migraine, joint pain, foggy head, fatigue, etc...

 

read the newbie thread.  you can search different things on this forum.  i would advise you to start a food journal and record your body's reactions to different foods.  many of us had to cut out dairy (i would try that if i were you) and different foods in the beginning until our intestines started to heal.  to eat 'clean' to begin with (avoid processed foods and stick with whole foods)  maybe try taking probiotics. <many of us have been 'sickly' and have had to take mega antibiotics which kills all the bacteria in your intestines, even the 'good' bacteria which aid digestion)   

 

welcome to the forum :)  i hope you feel better !


arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator

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Well, Ill be honest, yesterday I took some cheese off of a pizza that I really missed, but it probably caused it. I still eat dairy quite often because its a struggle to find things I like because sadly I am picky, but the weird thing is before I went gluten free I ate stuff LOADED with gluten, looking back, and I never had pains like this. Could it be because my system is getting a little cleared and then now its becoming a little sensitive and a small amount throws it off?

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Welcome to the board. Do take the previous posters advice and read the newbie thread.  It should be very helpful. Being gluten free when you are celiac involves a lot more than just reading labels or ordering a steak and potato at a restaurant. How our food is prepared is very important as even a very small amount of cross contamination will have the effect you are experiencing. It does get easier in time. Hang in there and ask any questions you need to ask. I hope you are feeling much better soon.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Oh and thank you! I hope you are feeling well yourself (:! I'm just glad doctors sort of know whats going on. Cant tell you how long my Dr tried to tell me I just had IBS and it was my nerves in high school.

yup.  ibs is a symptom, not a diagnosis.  kind of a catch-all in the gi world (aka cop out) yeah, i heard the "oh, you're just high strung" well, you tend to be that way when you always have to know where the closest bathroom is LOLZ

 

there is also such a thing as gluten withdrawal, it feels a little like the flu, so take it easy on yourself for the first few weeks.  a little extra rest, drink lots of water, think detox.

 

good LORD pizza would send me to the e.r.  -  you better just quit that (yes, i would die for a slice of good NJ pizza, but, don't.  just, don't.)  know this:  if you have celiac and you fool with the gluten, you will end up with worse things like lymphoma or complications from malabsorbtion, just a plethora of lovely side effects...  get serious!  and, yes, you may have been lessening the inflammation in your gut by eating gluten-free and then POW pizzabomb!  

 

think of it in terms of putting gasoline in a diesel engine.....   just won't run.  gotta have diesel !   ;)


arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator

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All of the above is excellent advice.

Also you can be wonky for anywhere from a couple months to 6 months or a year. Your body is going through a big upheaval process. Even though gluten was going to kill you - your body is rebelling at not having gluten. You can expect good days & bad days. You didn't get sick overnight and you won't heal overnight. If you took cheese off a gluten pizza then you got cross contaminated. Now you know not to EVER do that kind of thing again. That kind of lesson sort of makes a lasting impression on you doesn't it? Don't take a finger full of icing off a gluten cake or sauce off a plate of spaghetti  etc....

Also you might try avoiding soy -- many of us have problems with soy. After 6 months you can try soy & see what happens - you may be able to tolerate it then.

As to dairy, that was my greatest love!!!! DAIRY!!!!! YUMMMMMMMMMMMMMMMMM!!!!!!! You can try Lactaid milk & see if you do okay with that. Hard, hard, cheeses are more tolerated than softer ones. But really, you need to give your body at least a few months before trying any of that stuff.


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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Imodium is gluten free & fine for you to take. 

 

Drink lots of water, get lots of rest. 


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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