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Some Symptoms Better, Some Worse; Where To Start?


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2 replies to this topic

#1 NotMollyRingwald

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Posted 15 April 2013 - 06:37 PM

Hi,

 

A little backround: I'm new to celiac disease. I went gluten-free roughly eight weeks ago. The first two weeks were a little rough, but by week three I was feeling great; my symptoms (bloating, stomach upset, brain fog, fibromyalgia, muscle weakness) seemed to decrease and overall I was exponentially better. About week five, the bloating came back, and suddenly I had the most noxious smelling gas (sorry if TMI). All day, everyday. After two weeks of that, I made an appt with my Dr, who wanted to test for celiac. I haven't actually seen the results yet, but she did call last Friday with the opinion I "likely have celiac" (she has seen the results). Ok, well, that explains a lot, or at least I thought so, but now I'm not sure.

 

I'm starting to wonder if there is more to it. The bloating will not go away and stay away.  Most mornings I wake up deflated and gas free, but by bedtime my stomach is max capacity bloat city, complete with stomach cramps/pain, and constant gas.  Also, my FMS tender spots have flared (but to be fair, that could be due to the weather and/or diet change)  I'm not a huge dairy person (usually only greek yogurt and maybe some cheese), but I cut all dairy out completely today to see if that helps.  I keep a pretty clean diet, mostly lean meat, organic veggies, beans, rice, oatmeal (certified gluten-free), almond milk, berries, couple bananas a week, avacado, olive oil, almonds, cashews, walnuts, sunflower seeds, etc.  Some gluten free crackers (crunch master) on occassion.  A couple glasses of red wine and a bar of dark chocolate a week. A couple cups of coffee everyday (black or with almond milk), but I drink 80-90oz of water, plus herbal teas (usually mint, sometimes ginger-lemon), so I doubt dehydration is an issue. 

 

So, my questions: if you were me, would you another food intollerance at this point?  Or is it still to early into my gut healing process?   How do you go about discovering other intollerances?   What about this "leaky gut" I keep hearing about?   And what about the SCD, is that a good way to get back to a baseline??  Sorry for the abundance of "newbie" questions...Google has been my best friend and worst enemy... LOL And if there is a "101" area that I missed, please pass me to it (hate to make you waste your time repeating yourself).

 

Appreciate any advice/research/personal experience you are willing to provide.


  • 0

Amy 

 

If you're going through hell, keep going!

 

-~-~-~-~-~-~-~-~-~-~-~-~-~-~-~-~

Jeremiah 29: 11-13 "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart." 

-~-~-~-~-~-~-~-~-~-~-~-~-~-~-~-~

 


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#2 mushroom

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Posted 15 April 2013 - 07:01 PM

Hello, and welcome to the board. 

 

Newbie 101 is found here:  http://www.celiac.co...ewbie-info-101/ and it IS a good place to start. :)

 

It seems to take a good three months or so to settle into the diet and have things start to heal and recover.  Cutting dairy is a good idea, because the enzyme for digesting it is made in the area of the gut that has been damaged by gluten and will not return until you are healed, and it might pay to eliminate the oats for now too (even though certified gluten free) because some of us just cannot do oats regardless.  Coffee is also another that many find to be a problem although I wouldn't propose elimination right off the bat.

 

Leaky gut is a very real problem, and healing it up is the number one priority in my book because until you do so you risk having other foods get into the bloodstream in a partially digested state and having the body recognize them as 'non-self' and forming antibodies to them and bingo - there goes another food lost (at least temporarily).  I know because I became expert at this :ph34r:   To help things along at first many of us take probiotics, digestive enzymes (gluten can temporarily put the pancreas into low gear and deplete the number of digestive enzymes available to break down your food), and L-glutamine for healing.

 

If, after taking all these steps, you still are having problems, then it is time to start seeking out what other foods might be a problem via an elimination diet and food and symptom diary.  But you are still healing at the moment, a process which takes a lot longer than many anticipate.  So do be patient.  But if you have not already done so, have your primary care physician check your vitamin and mineral levels, particularly B12, D, folate, iron/ferritin, calcium, copper, zinc, magnesium and potassium.  Since celiac prevents absorbtion of nutrients you could be low in any of these and require supplementation.  You should also have your thyroid function assessed, TSH, free t3, free t4, and TPO antibodies.

 

I think that is enough to get you started.  There is lots of good reading here on the forum; oftentimes just reading others' stories answers a lot of your own questions.  But be sure to holler whenever you need help. :)


  • 1
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

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#3 NotMollyRingwald

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Posted 16 April 2013 - 08:31 AM

Neroli,

 

Thank you very much for the helpful information! 

 

Amy

 

 

 

Hello, and welcome to the board. 

 

Newbie 101 is found here:  http://www.celiac.co...ewbie-info-101/ and it IS a good place to start. :)

 

It seems to take a good three months or so to settle into the diet and have things start to heal and recover.  Cutting dairy is a good idea, because the enzyme for digesting it is made in the area of the gut that has been damaged by gluten and will not return until you are healed, and it might pay to eliminate the oats for now too (even though certified gluten free) because some of us just cannot do oats regardless.  Coffee is also another that many find to be a problem although I wouldn't propose elimination right off the bat.

 

Leaky gut is a very real problem, and healing it up is the number one priority in my book because until you do so you risk having other foods get into the bloodstream in a partially digested state and having the body recognize them as 'non-self' and forming antibodies to them and bingo - there goes another food lost (at least temporarily).  I know because I became expert at this :ph34r:   To help things along at first many of us take probiotics, digestive enzymes (gluten can temporarily put the pancreas into low gear and deplete the number of digestive enzymes available to break down your food), and L-glutamine for healing.

 

If, after taking all these steps, you still are having problems, then it is time to start seeking out what other foods might be a problem via an elimination diet and food and symptom diary.  But you are still healing at the moment, a process which takes a lot longer than many anticipate.  So do be patient.  But if you have not already done so, have your primary care physician check your vitamin and mineral levels, particularly B12, D, folate, iron/ferritin, calcium, copper, zinc, magnesium and potassium.  Since celiac prevents absorbtion of nutrients you could be low in any of these and require supplementation.  You should also have your thyroid function assessed, TSH, free t3, free t4, and TPO antibodies.

 

I think that is enough to get you started.  There is lots of good reading here on the forum; oftentimes just reading others' stories answers a lot of your own questions.  But be sure to holler whenever you need help. :)


  • 0

Amy 

 

If you're going through hell, keep going!

 

-~-~-~-~-~-~-~-~-~-~-~-~-~-~-~-~

Jeremiah 29: 11-13 "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart." 

-~-~-~-~-~-~-~-~-~-~-~-~-~-~-~-~

 



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