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3 Months Down. But Still Having Ups And Downs!


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11 replies to this topic

#1 jess_gf

 
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Posted 21 February 2011 - 06:10 PM

So I have been gluten free since November 2010 and it's been getting easier and easier to maintain the diet. This is good. I've never cheated and only accidentally gotten glutened at thanksgiving, once when I licked an envelope, and once when I took a generic brand of tylenol. The original pain and nausea that caused me to go to the Dr in the first place is gone.

But, I feel like there are still things that are wrong with me and this past week some symptoms have become more and more frequent. Lately I've been feeling really bloated and full after meals, and like a pocket of gas is expanding and prodding at the top of my stomach causing discomfort. Eventually it settles down. But it gets worse at night - as soon as I lie down it's back and I also get mildly nauseous. I've been having a terrible time concentrating. I feel tired. My muscles ache. I feel sad and long for a day warm enough that I can go outside and at least sit in some sun.

I'm not sure what's going on. Gluten withdrawal? Or is this just a stage of healing? Is it a symptom of something else related to Celiac like Leaky Gut Syndrome?

Here's what I usually take for supplements: MethylCobalamin sublinguals, Bromelain, L-Glutamine, a probiotic that I discovered expired last year (oops) and a daily vitamin gummy. I stopped taking Bromelain and L-Glutamine a bit ago suspecting they were making me feel bad but I don't think it was them, so I started taking L-Glutamine again today.

This weekend I bought some more supplies thinking I just need more support through this. I purchased some liquid vitaminslink (the gummies really don't have much in them), acidophilus link, calcium-Magnesium link, and fish oil link. Hopefully this will help.

Has anyone else had an experience like this?

I've also read some interesting research on the Paleo Diet. I am concerned that it's just a fad, but maybe a complete cut of all grains (rice is pretty much the only form I eat) will help? I've also been dairy free for about a month.
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Gluten Free since 11/2010
Dairy Free since 01/2011

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#2 txplowgirl

 
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Posted 21 February 2011 - 06:24 PM

Before you cut out the grains I would suggest cutting out dairy first. Dairy causes gas and stomach discomfort as well. I have a feeling it's the dairy, but that's just my opinion.
After a month if that dosen't work kick out the soy, then the grains.
Just a thought.
And yes, you could still be experiencing withdrawal symptoms on top of everything else. Another thing is have you checked all those supplements you're taking. Like for barley grass, wheat grass, etc. They can be very sneaky and get by you if you're not careful.
Hope you get to feeling better.
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Lupus, Connective Tissue Disease with Fibro type symptoms, Anemia, Anxiety, Depression, RA, Rynauds Syndrome, Chronic Fatigue Syndrome, Erosive Gastritis, Osteoporosis, Degenerative Disc Disease, Scoliosis, Bulging discs in lower back and neck, Pinched Nerves.

 

Soy free, MSG free, mostly Dairy free. Endoscopy shows blunted Villi which dr states as gluten sensitivity, so goin back to being gluten free


#3 Kelly777

 
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Posted 21 February 2011 - 07:07 PM

Check your Bromelain and L-Glutamine online for adverse/side effects. Those are two supplements I will not take after reading about them. I agree that it is very likely that you have lactose intolerance. I have been gluten free since the end of September and I just NOW am able to tolerate hard cheese. I cannot tolerate soy. It has always messed with my system long before I found out I was gluten intolerant. It is a rocky road for sure.
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#4 jess_gf

 
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Posted 21 February 2011 - 07:47 PM

I've been off L-Glutamine and Bromelain for at least a week now, though I just started taking L-Glutamine again today. I didn't feel any better while being off of them. I've also been dairy free for about a month. :/
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#5 cap6

 
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Posted 22 February 2011 - 09:24 PM

I have been taking L-Glutamine for the past 2 months for constipation but haven't noticed any difference so wondered if it was helping. It is supposed to help the gut heal though.
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#6 jess_gf

 
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Posted 21 March 2011 - 02:03 PM

Thought I'd update this. It's been 4 months now! Feels like an eternity. It seems like I keep taking 1 step forward and then 2 steps back. I'm still dairy free and mostly soy free except for my gluten-free soy sauce I use in stir frys. I've also recently decided to give the paleo diet a whirl since I haven't been feeling remarkably better since going gluten free. It's only been a week so far so it's hard to say if there's been an improvement or not - it seems like no matter what I do I discover something else that gives me a stomach ache!

I stopped taking bromelain since my stomach ached after taking it. I still take liquid vitamins, and a calcium-magnesium suppliment. If I remember I'll take a probiotic and fish oil.

It feels like my stomach is getting even more sensitive than before. I stopped drinking regular coffee and started drinking decaf, but I found that made it feel angry and burny too. I switched to only drinking tea and eventually that made it feel achy and burny. So now I just drink decaf tea. I tried a cup of jasmine green tea with honey today and even that bit of caffeine is bothering me. I ate a small bar of dark chocolate last night and that was too much - I guess I can only have one bite of that.

A few days ago I made my own turkey sausage (recipe here: http://cavemanfood.b...st-sausage.html) and that made my stomach burn. Argh why! It wasn't even that spicy. I feel like the only real thing that's improved since being diagnosed is that my constipation has gone away. At least there's something. :(
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#7 BrookeT

 
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Posted 11 April 2011 - 06:13 AM

Hello,

I can definitely empathize with you. I am about 7 1/2 months gluten free and am still having some issues myself. My level of damage was a Marsh III which is the highest amount you can have. I think the length of time it takes to heal is different for everyone and depends on the amount of damage you have to your intestines as well. I've learned that you have to be patient, the healing process takes time. Until your intestines heal, your body will have a difficult time with certain foods. I've read that it can take up to 2 years or more for your intestines to fully heal and that's without any gluten in your diet.

Try to eat less processed foods and more simple whole foods. Watch out for greasy, spicy & sugary foods as well. Be careful with decaf & instant coffee as some can contain gluten. Try chamomile, peppermint and ginger teas. They are soothing to the stomach. If you crave chocolate, Enjoy Life brand makes some yummy chocolate bars made from rice milk. I get them at Whole Foods.

Hang in there and try and stay positive. At least you have noticed some improvement. Hold on to that and know that more improvements will come gradually over time. Keep your diet simple for now and see how that works for you. Also, make sure all of your supplements are gluten free.

Have you had any of your vitamin levels checked by your Dr.? It would be a good idea to have your Dr. run a complete blood panel as well as having your vitamin levels checked. (Such as B & D) I don't know if you were diagnosed with celiac or just have a gluten intolerance or sensitivity, but many people with celiac are deficient in certain vitamins, so it would be worth checking into.

Feel free to contact me if you have any questions. : )

Thought I'd update this. It's been 4 months now! Feels like an eternity. It seems like I keep taking 1 step forward and then 2 steps back. I'm still dairy free and mostly soy free except for my gluten-free soy sauce I use in stir frys. I've also recently decided to give the paleo diet a whirl since I haven't been feeling remarkably better since going gluten free. It's only been a week so far so it's hard to say if there's been an improvement or not - it seems like no matter what I do I discover something else that gives me a stomach ache!

I stopped taking bromelain since my stomach ached after taking it. I still take liquid vitamins, and a calcium-magnesium suppliment. If I remember I'll take a probiotic and fish oil.

It feels like my stomach is getting even more sensitive than before. I stopped drinking regular coffee and started drinking decaf, but I found that made it feel angry and burny too. I switched to only drinking tea and eventually that made it feel achy and burny. So now I just drink decaf tea. I tried a cup of jasmine green tea with honey today and even that bit of caffeine is bothering me. I ate a small bar of dark chocolate last night and that was too much - I guess I can only have one bite of that.

A few days ago I made my own turkey sausage (recipe here: http://cavemanfood.b...st-sausage.html) and that made my stomach burn. Argh why! It wasn't even that spicy. I feel like the only real thing that's improved since being diagnosed is that my constipation has gone away. At least there's something. :(


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#8 Evangeline

 
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Posted 12 April 2011 - 10:20 AM

L-Glutamine causes me to have a gluten-like reaction. Also, soy causes many Celiacs to have a gluten-like reaction --some people say it is worse than gluten itself.

Another idea is trying the Gluten Society's Advice and try going grain-free. I suggest you google them and watch some of their videos for more information. According to them, corn is 55% gluten and they believe Celiacs don't only react to the gliadin in wheat, barley and rye, but also to the gluten in corn and rice (although less in rice). Those are the three main things that might help you. Best of luck!
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#9 Igg postive

 
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Posted 12 April 2011 - 02:52 PM

I have stomach bloating right under my ribs. The area where my gallbladder operation was is painful too. At lunch today I had a pain sharp pain in the bottom/ middle of my ribs then it eased off. The pain seems to be easing off slowly and overall it is getting better. It has been a month for me on the diet. I have noticed it is easier for me to do activities that require bending over. This was very uncomfortable to me before. I am glad you posted because I was wondering how long these symptoms can hang on. Was your blood tests/biopsy positve for Celiac?
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#10 dube

 
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Posted 14 April 2011 - 07:14 PM

Try to eat less processed foods and more simple whole foods. Watch out for greasy, spicy & sugary foods as well. Be careful with decaf & instant coffee as some can contain gluten. Try chamomile, peppermint and ginger teas. They are soothing to the stomach. If you crave chocolate, Enjoy Life brand makes some yummy chocolate bars made from rice milk. I get them at Whole Foods.



What about decaf tea? I drink that every night and I still think I'm being glutened...
I did figure out I am having a problem with fractose...
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#11 cap6

 
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Posted 16 April 2011 - 07:22 AM

It took me a year to feel like dancing again. At 13 months I still have days when I hurt and am unable to trace it to any particular item. It can take several months before dairy products will agree with you. Just now I can eat a little bit of cheese or a bite of ice cream once in a while. Lots of whole foods and nix to the processed stuff. When I first went gluten-free friends loaded me with gluten-free muffin mixes, cakes mixes etc..... it's still all in the freezer! Takes a long time for the gut to heal. From what I have learned on this site the more damage and the older you are the longer it can take to heal. Hang in.. you are getting better, a little at a time. :)
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#12 sb2178

 
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Posted 16 April 2011 - 09:49 AM

Have you been checked for an ulcer?
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2/2010 Malabsorption becomes dramatically noticable
3/2010 Negative IgA EMA; negative IgA TTG
4/2010 Negative biopsy
5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)
5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?




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