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MizzyLou

I Have Regressed After Two Weeks

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For the first ten days after going gluten free, I felt great!  My loose stools and diarrhea had stopped almost immediately and I finally felt like I could eat.  I haven't been properly diagnosed as having Celiac or a gluten sensitivity, but decided to eliminate gluten to see if it would make a difference in IBS symptoms.  After the ten days of awesomeness, I started to revert back to old bathroom habits.  I have been careful not to eat anything that isn't gluten free.  I don't eat at restaurants, and have been using cookware, etc. apart from the rest of the family's.  I haven't been taking any medication or using any new toothpaste, toiletries, etc. that I didn't use when I first went gluten free.  There is always a chance of CC, but I am even more careful now than when I first started and experienced such a good change.  Does anyone have any idea why I would be regressing like this?  It is so disappointing, as I finally felt like my life was turning around.  I am going to try to eliminate all grains for a couple days to see if that makes a difference.  My fear is that my body got use to not having gluten and is returning to it's former self.  LIke I said, I don't know if gluten was ever my problem at all.  I feel like maybe I am just screwing myself up even more.  UGH, the frustration.  Feeling like I will never escape this hell that my body is confining me to.

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Sorry, you are going through this. It would be nice to know what is going on.   I wouldn't automatically decide it isn't working.  You may be experiencing withdrawal, other intolerances, or Cross contamination.  Don't give up.  Keep being vigilant about gluten.

 

 

 

You didn't by chance start taking magnesium?

 

Get Well,   ***

 

D

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If you start reading a lot here you will see that this is VERY common. It's almost as if we go through a "honeymoon" period designed to let us know we are on the right track and to encourage us by letting us get a glimpse of what it feels like to feel good. Now that your body has gotten a taste of good health it has gotten down to the business of healing. It might take a while before you get to feeling really good again, but you WILL get there. Start by keeping your diet simple, keeping a food diary, and by going organic if at all possible.

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Sorry, you are going through this. It would be nice to know what is going on.   I wouldn't automatically decide it isn't working.  You may be experiencing withdrawal, other intolerances, or Cross contamination.  Don't give up.  Keep being vigilant about gluten.

 

 

 

You didn't by chance start taking magnesium?

 

Get Well,   ***

 

D

Thank you for your reply.  I am happy to say that I think I am back on the right track today.  Ate very simple yesterday, and no problems this morning.  I am not throwing the towel in yet, and I need to remember that I can't go into panic mode every time I have a bad couple of days! Take care.

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If you start reading a lot here you will see that this is VERY common. It's almost as if we go through a "honeymoon" period designed to let us know we are on the right track and to encourage us by letting us get a glimpse of what it feels like to feel good. Now that your body has gotten a taste of good health it has gotten down to the business of healing. It might take a while before you get to feeling really good again, but you WILL get there. Start by keeping your diet simple, keeping a food diary, and by going organic if at all possible.

Thanks for your reply, once again.  I definitely think I overloaded my system.  If it didn't have gluten in it, I ate it!  I guess that's what I get for thinking that all my problems would immediately disappear!  Kept it really simple yesterday, and feeling much better today.  It's fish, rice, and bananas for me!  I also ordered a digestive enzyme (gluten-free of course) that I'm looking forward to trying.  We'll see if that will help my healing body process foods a little better.  Have a great day!

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This sounds like me. I had iron def anemia, elevated liver enzymes, abd pain with bloating and burping all the time. I had celiac negative blood and negative biposy. I took iron supplements for 3months and my anemia improved, did all kinds of liver function tests and they can't find anything to explain the liver enzymes ( abd sono negative). GI doctor told me nothing is wrong with me. I got sad, then mad, then decided to develop my own treatment plan since I did not get any help from doctors. I decided that I felt best when I had an empty stomach so I started only having liquids. The thought was liquids would digest faster and be easier on me. I had a colonoscopy the same day as the biopsy, so my insides were empty. After a couple days, I started feeling better, then one day I felt horrible ( bloated burping, burning pain in my right upper abd). I looked at the bottle of juice I had just finished and it had barley in it. So I decided maybe the problem was gluten after all. Stared eatting gluten-free and felt immediately better. About 2 weeks later I felt like crap again. So now is it withdraw or something else entirely ? I was so happy when I was feeling so good, because I thought this is great " I can control it" and now this....I am worried that it won't ever get better now. I've been feeling bad for about 4 days now. It's not as bad as before I went gluten-free, but it's enought to worry me. I am afraid that I won't get better and that maybe I don't have my answer, but for now I am going to stick with it and see what happens. I hope that you are feeling better and that the enzymes help you, I have not tried any supplements at all. They took me off the iron, because my hgb went up. They have no explanation for the anemia either. I'm sorry your not feeling good, but I have hope from the people that have made the same comments about feeling good initially and then bad again It gives me hope that I will improve too. We just need to hold on for awhile longer. At least that's what I'm telling myself right now.

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That happened to me too.  I got more sensitive to trace gluten contamination as time went on and I had to make modifications to my diet for the first year or so.  What really gets me is when the manufacturer changes something and I start reacting to something that was formerly safe.  It can take a long trial of elimination/challenge diets to figure out the source.  Keeping a food/symptoms journal helps a lot.  Keeping the diet simple and unprocessed helped me a lot.

 

It is easy to get overly concerned when we take a misstep.  It sure doesn't help that anxiety and depression are some of my glutening symptoms.

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I wouldn't overlook other vitamin and mineral deficiencies as a cause of problems. Many of the problems I had hoped would improve when I went gluten free got worse instead, but seem to respond well to vitamin supplements. 
(Vitamin D and B12 both appear to be problematic for me though I'm sure there are others I haven't discovered yet).

Gluten reactions can include digestive upset, but seem to follow other regular patterns from even the smallest contamination. From what I've experienced and read, you can expect to be irritable in the first several hours, get a bad headache, then have some days of brain fog. I get this from even the tiniest bit of gluten, even if my digestion stays on track.

I know that everyone is different, but if you're not having these more classic gluten reactions, then I wouldn't rule out looking to something other than gluten as a possible cause of digestive problems. And if you are, I'd guess that you are getting gluten contamination.

How about doing a food diary, but also add to it the items that you use to prepare your foods? It could be that your new gluten-free toaster could have been contaminated when you weren't looking.

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This sounds like me. I had iron def anemia, elevated liver enzymes, abd pain with bloating and burping all the time. I had celiac negative blood and negative biposy. I took iron supplements for 3months and my anemia improved, did all kinds of liver function tests and they can't find anything to explain the liver enzymes ( abd sono negative). GI doctor told me nothing is wrong with me. I got sad, then mad, then decided to develop my own treatment plan since I did not get any help from doctors. I decided that I felt best when I had an empty stomach so I started only having liquids. The thought was liquids would digest faster and be easier on me. I had a colonoscopy the same day as the biopsy, so my insides were empty. After a couple days, I started feeling better, then one day I felt horrible ( bloated burping, burning pain in my right upper abd). I looked at the bottle of juice I had just finished and it had barley in it. So I decided maybe the problem was gluten after all. Stared eatting gluten-free and felt immediately better. About 2 weeks later I felt like crap again. So now is it withdraw or something else entirely ? I was so happy when I was feeling so good, because I thought this is great " I can control it" and now this....I am worried that it won't ever get better now. I've been feeling bad for about 4 days now. It's not as bad as before I went gluten-free, but it's enought to worry me. I am afraid that I won't get better and that maybe I don't have my answer, but for now I am going to stick with it and see what happens. I hope that you are feeling better and that the enzymes help you, I have not tried any supplements at all. They took me off the iron, because my hgb went up. They have no explanation for the anemia either. I'm sorry your not feeling good, but I have hope from the people that have made the same comments about feeling good initially and then bad again It gives me hope that I will improve too. We just need to hold on for awhile longer. At least that's what I'm telling myself right now.

I am so sorry to hear you are feeling so badly.  It's been a few days since I've been able to visit the website, so I am sorry for not replying earlier.  I completely share your frustration with the doctors, etc.  It is so unsettling to say the least, when everyone keeps telling you there's nothing wrong, yet your body clearly says there is.  You know, I've been reading more about the connection between the biliary system (liver, pancreas, gallbladder, etc.) and Celiac.  There have been several articles that I've run across that talks about this connection.  I don't have any links to send you now, but if you need me to I will post them for you.  I have long thought I had a problem with my pancreas or gallbladder.  I had a test that ruled out the gallbladder, but nothing other than blood work to check the pancreas.  I am wondering, have you had your gallbladder checked?  You mentioned ruq abdominal pain.  That can be caused by the gallbladder, as well as bloating and burping.  I have been having good and bad days.  Today was not so good, but it was also the start of the little monthly visit, so I am attributing the D to that.  I hope that you are eating okay.  You can't live on liquids.  I know that just the thought of eating can cause a lot of anxiety, but you have to.  I tried the supplements yesterday, and didn't notice much of a difference.  Forgot to take them to work with me today, so none so far.  We'll see.  Take care and feel better. I'm here if you need to vent. 

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That happened to me too.  I got more sensitive to trace gluten contamination as time went on and I had to make modifications to my diet for the first year or so.  What really gets me is when the manufacturer changes something and I start reacting to something that was formerly safe.  It can take a long trial of elimination/challenge diets to figure out the source.  Keeping a food/symptoms journal helps a lot.  Keeping the diet simple and unprocessed helped me a lot.

 

It is easy to get overly concerned when we take a misstep.  It sure doesn't help that anxiety and depression are some of my glutening symptoms.

Oh my goodness, I can totally relate to the depression and anxiety thing.  Thanks for your advice.  I can tell this is going to be a journey of trial end error.

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I wouldn't overlook other vitamin and mineral deficiencies as a cause of problems. Many of the problems I had hoped would improve when I went gluten free got worse instead, but seem to respond well to vitamin supplements. 

(Vitamin D and B12 both appear to be problematic for me though I'm sure there are others I haven't discovered yet).

Gluten reactions can include digestive upset, but seem to follow other regular patterns from even the smallest contamination. From what I've experienced and read, you can expect to be irritable in the first several hours, get a bad headache, then have some days of brain fog. I get this from even the tiniest bit of gluten, even if my digestion stays on track.

I know that everyone is different, but if you're not having these more classic gluten reactions, then I wouldn't rule out looking to something other than gluten as a possible cause of digestive problems. And if you are, I'd guess that you are getting gluten contamination.

How about doing a food diary, but also add to it the items that you use to prepare your foods? It could be that your new gluten-free toaster could have been contaminated when you weren't looking.

Thank you for your reply.  I definitely haven't ruled anything out yet.  The doctors just haven't been able to find anything wrong even though I keep feeling more and more rotten.  I have started a food diary.  Hopefully that will provide some answers.  Take care.

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