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Am I Re-Glutening Myself With Something Every Day Or Is This A Super Long Glutening?


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#16 flowerqueen

 
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Posted 12 September 2012 - 09:16 AM

Flower,

What I found with my own body, once I was clean of gluten I felt amazing. That was short lived. I next found that potatoes gave me all of the symptoms of gluten. Removing them helped, but a few days later I was coming up with symptoms. I removed cheese, that seemed to help marginally. Then I removed my beloved frothy latte and I again started getting better.

Right now I'm eating only a few root vegetables and meat. This is all I can eat to maintain any kind of good feeling. My biggest complaint is drinks - many drinks affect me such as soda pops and gatorade. I am even a little suspicious of cranberry juice if I have more that just a few ounces. Luckily plain coffee is still working for me.

I don't know if this helps you at all, but it kind of confirms what you are going through I guess.


Thank you, it confirms the fact that once we begin our celiac diet, other intolerances come to the surface. I'm still playing detective at the moment and keeping a food diary until the culprit is exposed. I was disappointed that after only a short time on the gluten-free diet that I started to feel ill again, as I was pinning my hopes on a quicker recovery. Having seen what everyone else is going through, I realise that things are not that simple.

Do you think you will have to cut these other items out indefinitely? Or will you try to introduce potato etc., when your system has settled down? As I've heard of people reintroducing things they were intolerant to after they've omitted them for a while - as long as it's done in moderation of course.
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Under active thyroid; diabetic; hiatus hernia; acid reflux; dairy intolerant; arthritis; sciatica due to spine degeneration; diagnosed with coeliac disease November 2011; fibromyalgia; allergic to Thyme & MSG and alcohol. Allergic to TCP antiseptic, and plasters. Taking medication for severe muscle spasms in upper back.
Despite all, remaining positive!

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#17 JNBunnie1

 
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Posted 12 September 2012 - 11:43 AM

I had to go without tomatos for a year, and was then able to successfully reintroduce them. It does happen. Keep in mind that it may take a long time, and may not happen at all, too.

It definitely sounds like you're having a problem with the lentils, and a doublecheck on all your supplements and personal care products are in order. Also, don't kiss the man when he's been eating gluten!
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#18 RonSchon

 
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Posted 12 September 2012 - 06:35 PM

Flower,

Yes, I will hope to one day be tolerant of more things.

Life can only be understood backwards, unfortunately it is lived in forward....

I think that what may have happened when I took all things gluten from my diet, I ended up overloading myself on other things - like the lectins (GottaSki has been a great educator for me as her experience has been similar to what I'm experiencing).

Right at first, eggs and cheese and milk and potatoes were fine for me. It took almost a month before I started reacting to them.

The first few times I reacted to them, I was dining out and blaming CC for the reaction.

The diary is key. It lets you play back your last ingestions and single out possible culprits.

It is important to figure out what your core food can be. You may have to narrow that core as you go.

For me, I don't know how I'll go about bringing things back. This is a challenge I didn't know I would have to be up for a few months ago.
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#19 shadowicewolf

 
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Posted 12 September 2012 - 07:43 PM

what about toothpastes and whatnot, did you verify those?

As for the food, after i went gluten free i became allergic to tomatoes (not surprising though, they had been giving me stomach issues, then it exploded into something else).

I can no longer handle fatty foods well (like bacon for example) as it gives me a belly ache and causes my GERD to react badly.

When i decide to splerg and eat my alfredo goodness, i load it up with a lot of spinage, chicken, and noodles and eat about a serving size. If i eat above that, generally, i'll get a belly ache.

I had to cut my gluten free oats out because they were doing the same. I've yet to had the urge to retry them again.
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#20 dilettantesteph

 
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Posted 13 September 2012 - 09:59 AM

I am super sensitive. It took me 4 years or so to figure out a diet that doesn't make me sick. I started working part time again after that! Now I am going to try to transition to full time.

How I did it, and still do it is by keeping track of my symptoms and keeping track of what I eat. My sensitivity levels increased dramatically as time went on. I went through several sessions of eliminating things one at a time and still getting sicker as I kept guessing wrong. The worst thing to do at times like these is splurge on something questionable. The temptation is great though, and I did it a few times. I also went for countless tests to find out if I was missing something. So far it is just tiny amounts of gluten and oats. Anything that I have been able to grow myself, I have been able to eat, even when that same fruit, grain or vegetable made me sick from other sources. You need to keep track of not only what you eat, but where it comes from. There is potential for contamination in many areas. You also need to keep track of contact with gluten eaters and contact with things that gluten eaters have come into contact with. Also, trips to places where there might be airborne gluten, like a bakery.

There have been many occasions where something which had been safe became unsafe. People change how they do things and don't put those details online, or tell you about them.

You need a good idea of what your response time and symptoms are. It takes time, but if you are patient, it can happen.
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#21 gluten-is-kryptonite

 
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Posted 14 September 2012 - 05:47 AM

Could be leaky gut syndrome which is often a result of Celiac. The gut gets so inflamed and irritated that food particles pass through that shouldn't - this sets off an autoimmune reaction and symptoms.

I have really struggled with this- If i get accidentally glutened my gut gets damaged and then I react for quite a while (even to Gluten-Free food) until I get my gut inflamation down.

Just my 2 cents and I could be wrong but this is what I have experienced. i didn't start feeling really good on the Gluten-Free diet until I addressed the leaky gut.
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#22 aquaholical

 
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Posted 14 September 2012 - 10:41 AM

Can you try split green peas instead of the lentils? I suggest you look at all your vitamins and meds also, and maybe eliminate them for a bit to see if anything changes. It does sound like something you are taking in every day is affecting you. Quinoa needs to be very well washed before cooking as it has saponins (soaps) in the shell that can make people sick.

Meats can help by supplying proteins that our bodies need to heal. Mostly they are well tolerated but some people do have problems with red meat. If you are losing weight due to your diet restrictions it makes sense to eat some meat to get back in the healing mode.


I'm a little suspicious that legumes might be a part of the problem. I can now verify that lentils were getting me for sure and I'm going to cut out ALL legumes for a week to see what happens (so no split peas..). I am losing a lot of weight so starting to seriously consider adding fish back in. (I REALLY do NOT like the way it tastes, but my BF is from the coast and swears he can cook it well enough to get me on board ;) )


I had to go without tomatos for a year, and was then able to successfully reintroduce them. It does happen. Keep in mind that it may take a long time, and may not happen at all, too.

It definitely sounds like you're having a problem with the lentils, and a doublecheck on all your supplements and personal care products are in order. Also, don't kiss the man when he's been eating gluten!


Thanks for reminding me of supplements. I have to take around 100 pills a day for my Lyme treatment and maybe I missed something there. I've combed through them multiple times but once more couldn't hurt. I mostly use the Vitamin Shoppe brand for my supplements because they claim to be hypoallergenic, but I should follow up and confirm the manufacturing as well as ingredients are.

And the BF has been really good about not kissing me now unless he's brushed his teeth! ;)



what about toothpastes and whatnot, did you verify those?

As for the food, after i went gluten free i became allergic to tomatoes (not surprising though, they had been giving me stomach issues, then it exploded into something else).

I can no longer handle fatty foods well (like bacon for example) as it gives me a belly ache and causes my GERD to react badly.

When i decide to splerg and eat my alfredo goodness, i load it up with a lot of spinage, chicken, and noodles and eat about a serving size. If i eat above that, generally, i'll get a belly ache.

I had to cut my gluten free oats out because they were doing the same. I've yet to had the urge to retry them again.


I don't eat too many tomatoes but I will be sure to investigate those as well, know they can be a common irritant. Thanks!



I am super sensitive. It took me 4 years or so to figure out a diet that doesn't make me sick. I started working part time again after that! Now I am going to try to transition to full time.

How I did it, and still do it is by keeping track of my symptoms and keeping track of what I eat. My sensitivity levels increased dramatically as time went on. I went through several sessions of eliminating things one at a time and still getting sicker as I kept guessing wrong. The worst thing to do at times like these is splurge on something questionable. The temptation is great though, and I did it a few times. I also went for countless tests to find out if I was missing something. So far it is just tiny amounts of gluten and oats. Anything that I have been able to grow myself, I have been able to eat, even when that same fruit, grain or vegetable made me sick from other sources. You need to keep track of not only what you eat, but where it comes from. There is potential for contamination in many areas. You also need to keep track of contact with gluten eaters and contact with things that gluten eaters have come into contact with. Also, trips to places where there might be airborne gluten, like a bakery.

There have been many occasions where something which had been safe became unsafe. People change how they do things and don't put those details online, or tell you about them.

You need a good idea of what your response time and symptoms are. It takes time, but if you are patient, it can happen.


Oh gosh, 4 years??? :/ I've decided over the next couple of weeks to just do steamed veggies, baked potatoes, etc etc, then HOPEFULLY my symptoms will finally clear and I can add nuts back in/see how I react, then beans. I'm really hoping this was all just lentils (I ate them almost every day, so it would make sense) but am doing like everyone suggests and writing it all down in my food diary and investigating all possibilities. I have this feeling I might be like you and need to start a garden..

This was very helpful, dilettantesteph; thank you!
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#23 ravenwoodglass

 
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Posted 15 September 2012 - 02:52 AM

Thanks for reminding me of supplements. I have to take around 100 pills a day for my Lyme treatment and maybe I missed something there.




Have you talked to the doctor about the meds you are taking for Lyme? I wonder if one or more of those meds might be the issue rather than gluten or another intolerance.
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celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#24 flowerqueen

 
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Posted 15 September 2012 - 05:15 AM

Flower,

Yes, I will hope to one day be tolerant of more things.

Life can only be understood backwards, unfortunately it is lived in forward....

I think that what may have happened when I took all things gluten from my diet, I ended up overloading myself on other things - like the lectins (GottaSki has been a great educator for me as her experience has been similar to what I'm experiencing).

Right at first, eggs and cheese and milk and potatoes were fine for me. It took almost a month before I started reacting to them.

The first few times I reacted to them, I was dining out and blaming CC for the reaction.

The diary is key. It lets you play back your last ingestions and single out possible culprits.

It is important to figure out what your core food can be. You may have to narrow that core as you go.

For me, I don't know how I'll go about bringing things back. This is a challenge I didn't know I would have to be up for a few months ago.


Yes I agree about the diary. I'm making notes on symptoms as I go.
  • 0
Under active thyroid; diabetic; hiatus hernia; acid reflux; dairy intolerant; arthritis; sciatica due to spine degeneration; diagnosed with coeliac disease November 2011; fibromyalgia; allergic to Thyme & MSG and alcohol. Allergic to TCP antiseptic, and plasters. Taking medication for severe muscle spasms in upper back.
Despite all, remaining positive!

#25 flowerqueen

 
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Posted 15 September 2012 - 05:19 AM

what about toothpastes and whatnot, did you verify those?

As for the food, after i went gluten free i became allergic to tomatoes (not surprising though, they had been giving me stomach issues, then it exploded into something else).

I can no longer handle fatty foods well (like bacon for example) as it gives me a belly ache and causes my GERD to react badly.

When i decide to splerg and eat my alfredo goodness, i load it up with a lot of spinage, chicken, and noodles and eat about a serving size. If i eat above that, generally, i'll get a belly ache.

I had to cut my gluten free oats out because they were doing the same. I've yet to had the urge to retry them again.


I don't know whether you can get it across the pond, but I use Kingfisher gluten free toothpaste,mit's the only one I dare use as I haven't found any other gluten free toothpaste.
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Under active thyroid; diabetic; hiatus hernia; acid reflux; dairy intolerant; arthritis; sciatica due to spine degeneration; diagnosed with coeliac disease November 2011; fibromyalgia; allergic to Thyme & MSG and alcohol. Allergic to TCP antiseptic, and plasters. Taking medication for severe muscle spasms in upper back.
Despite all, remaining positive!

#26 kareng

 
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Posted 15 September 2012 - 05:34 AM

I don't know whether you can get it across the pond, but I use Kingfisher gluten free toothpaste,mit's the only one I dare use as I haven't found any other gluten free toothpaste.



That's too bad. Here, in the US, I haven't found any that have gluten.
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#27 aquaholical

 
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Posted 15 September 2012 - 08:16 AM

Have you talked to the doctor about the meds you are taking for Lyme? I wonder if one or more of those meds might be the issue rather than gluten or another intolerance.


I'm still waiting on Vitamin Shoppe to return my call/email about their manufacturing process (know all the ingredients for their name brand supplements claim to be hypoallergenic, but don't know about manufacturing.) But yesterday I FINALLY had a day of feeling halfway decent, so I made sure to take my herbs alone and wait hours to eat anything to see if I had any sort of reaction. I didn't, so I'm really hoping they're okay.

Dates are another story. I had a few dates after dinner and started bloating, started freaking out that it was the sweet potato I had for dinner (staple of my diet). But when I got back from a friends house later at night and snacked on a few more dates my stomach went totally bananas, had a very difficult time sleeping last night. This is so frustrating. I'm starting to get scared that I won't be able to eat ANYTHING.
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#28 aquaholical

 
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Posted 15 September 2012 - 11:29 AM

Okay, thanks to the food diary I may be getting somewhere. Dates bothered me last night, this morning I ate a banana and my belly ballooned out and I got D, the other day when I ate an apple the same thing happened. Hello fructose malabsorption?
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#29 IrishHeart

 
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Posted 15 September 2012 - 12:52 PM

I am just going to offer you all this one thought. I am sensitive to trace gluten and I was very ill for many years before I was diagnosed. That said, please keep in mind that healing the intestines takes a LONG time. Some say 6 months to 2 years--or more. It just is what it is. It took me nearly 15 months on a strict gluten-free diet to start to absorb nutrients again and feel somewhat normal and not have some pain in some area of the GI tract. (this was MY experience and yours may be different) Nearly 22 months in, and I still have extra-intestinal symptoms to resolve. It's a long road to recovery for most of us.

The majority of you guys posting on this thread are still in the beginning stages of this gluten-free life. I do not want to sound harsh, but honestly, you simply cannot tell if you have additional food intolerances by "guessing".

If you do suffer an accidental glutening, it takes many WEEKS for the inflammation to die down.

So it is very difficult for anyone to tell if it's this food group or that food group when your gut is still healing.

For the first 6 months, it is suggested by most celiac doctors that you avoid dairy and too many processed, packaged foods. Some foods are difficult (even for non-celiacs) to digest, so lentils, beans and other legumes (such as peanuts) may give you some grief.
Certified oats--may not be the best thing for you--- and some docs say wait 2 years for those.

Everyone is different and you may be able to handle these foods.

If any of you eat out this early in the game, please be aware that there is a chance you will be CCed. It's just a simple fact.


Take probiotics, use digestive enzymes, drink water, lay off the wine for a while. Just suggestions.

Let your gut heal some more before you all start thinking every single food is a problem food. I have been in your shoes and you will drive yourselves insane trying to figure it out while you are still in the beginning stages of healing your damaged gut lining. In the beginning, it may seem as if EVERY food is causing a reaction--but it may not be that at all.

And toothpaste rarely has gluten in it. I have not seen any yet.

http://celiacdisease...uld-I-Worry.htm

Regarding fructose malabsorption? A doctor can order a breath test to see if this is the case. Or you can go without fruit for a week and try one piece.

Keeping a food journal is a great idea for some people. It works well.

I, however, have several notebooks full of this daily information I wrote faithfully for a year and I did not learn a darn thing from any of it. I rotated foods in and out, eliminated foods for weeks at a time, tried every diet suggested (paleo, low sals, even the falisafe diet) and I just became frustrated. I needed meat for muscle recovery and B-12 and leafy greens for folate and I needed fiber ---so I just chose more of those food proteins. For awhile, though, I thought I would never be able to eat most of the foods I love ever again. (tomatoes, oranges, coffee, chocolate, cheese--were all out for a while)

Once healed, I can eat all of them.

Just some thoughts.

Best wishes.
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#30 aquaholical

 
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Posted 15 September 2012 - 02:23 PM

If you do suffer an accidental glutening, it takes many WEEKS for the inflammation to die down.

So it is very difficult for anyone to tell if it's this food group or that food group when your gut is still healing.



Thank you for answering my initial question. For the majority of the last couple of months, that's what I've assumed all this mess has been lately: just a horribly rocky road to healing. However, I do think I am truly onto something with the fructose malabsoption. I realize I'm a noob and could just be complicating things in my impatience to find relief, but looking back over my food diary the last few weeks every piece of fruit I've eaten has been followed by almost instant D and bloating while other meals throughout the day (plain baked potato, for example) I had no problem after eating. I'm going to try cutting it out for a week as you suggest to see. Thanks for all the information. It was truly very helpful and just what I needed to hear.
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