How Do You Cope With This Frustrating Disease

[madminx]

Hello everyone,

I was wondering how you all cope with the

incredibly frustrating cycle of celiac disease. I am livid. I got glutened about 3 weeks ago and decided by process of elimination that it was most likely caused by the Absolutely Gluten Free brand flatbread I ate. I was finally starting to feel normal again when last night I began to have symptoms again. Then I found out that it was actually the Simply Organic brand thyme all along that is probably cross contaminated. Now I have to be sick all over again for another 3 to 4 weeks and I am really fed up with this bs. I don't know how to cope with the absurdity of finally feeling well again and then just like that getting sick again from one stupid little mistake.

[bartfull]

It is probably NEITHER one that was CC'd. It is probably just that you are still healing and like the rest of us, you will have good days and bad days at the beginning. If you haven't read the newbie 101 thread in the coping section yet, please do. It will help you a lot.

[1desperateladysaved]

One must analyze, (as you showed you did) I wouldn't use a product again that I suspected.  Then one must give themselves time to heal.  It can be a rough trip for awhile, but when you head in the right direction, you are bound to get somewhere!  Best wishes for healing.

 

Dee

[icelandgirl]

I'm sorry...that is frustrating.  I've been there too.  I do find this disease to be extremely frustrating!

 

How long have you been gluten free?  I think it takes longer to heal than we expect in the beginning.  Do you keep a food diary to figure out when you get symptoms what may have caused it?  I doubt that either of those things would cause a glutening, but that doesn't mean you don't have an intolerance to something else.  It seems like a lot of people on here do.  The food diary might be able to help figure that out.

 

Take care of yourself...I hope you feel better soon.

[cyclinglady]

The crackers look to be just fine. It is a certified gluten-free product. Perhaps you are reacting to one of the ingredients? I had gluten-like issues with Xanthan Gum. It affects me, but not my husband. Go figure!

I am sorry you are not feeling well.

[Gemini]

I have had those crackers/flatbread and they are really, really good.  I am a very sensitive Celiac but have been gluten-free almost 10 years so can handle just about anything, food wise.

I have never had any problems with them but they have ingredients that may cause problems for some people....especially if you are new to the diet.  It should not take 3-4 weeks to recover from a glutening so it might just be that you are not healed yet and there are going to be many foods that don't agree with you in the beginning.  It happened to me at first too.

 

Hang in there and I hope you feel better soon! 

[moosemalibu]

I am going to reply on a mental level - as this disease affects us all mentally - and offer that in addition to worrying about the obvious physical symptoms you consider therapy or perhaps meditation. I started therapy and have learned a lot of coping skills instead of  running with my anger, sadness and isolation which was making me a very poor person to be around.

[madminx]

It is probably NEITHER one that was CC'd. It is probably just that you are still healing and like the rest of us, you will have good days and bad days at the beginning. If you haven't read the newbie 101 thread in the coping section yet, please do. It will help you a lot.

Hello, Thanks for the reply. I know my post is a bit misleading, but I am by no means a newbie. I have been on a gluten-free diet for almost 2 years. This is the first time (and second time last night) I have been glutened in months. 

[madminx]

I'm sorry...that is frustrating.  I've been there too.  I do find this disease to be extremely frustrating!

 

How long have you been gluten free?  I think it takes longer to heal than we expect in the beginning.  Do you keep a food diary to figure out when you get symptoms what may have caused it?  I doubt that either of those things would cause a glutening, but that doesn't mean you don't have an intolerance to something else.  It seems like a lot of people on here do.  The food diary might be able to help figure that out.

 

Take care of yourself...I hope you feel better soon.

Hello, thanks for your reply. I've been gluten free for almost 2 years. 3 weeks ago was the first time I got glutened in months (and last night was the second time in months). That's another thing that makes this whole thing so infuriating, I thought I had it all under control and then one little mistake messes it up again. No I don't keep a food diary but I definitely should. 

[madminx]

I have had those crackers/flatbread and they are really, really good.  I am a very sensitive Celiac but have been gluten-free almost 10 years so can handle just about anything, food wise.

I have never had any problems with them but they have ingredients that may cause problems for some people....especially if you are new to the diet.  It should not take 3-4 weeks to recover from a glutening so it might just be that you are not healed yet and there are going to be many foods that don't agree with you in the beginning.  It happened to me at first too.

 

Hang in there and I hope you feel better soon! 

Thanks for the reply. Yeah, I don't think it was the crackers. I think it was the thyme. I found a website that says Simply Organic single ingredient spices are not certified gluten free and the company does not guarantee that cross contamination is not present. 

I know my original post is a bit misleading, but I have been gluten free for almost 2 years. 3 weeks was the first time I got glutened in months (and last night was the second time in months). 

[madminx]

I am going to reply on a mental level - as this disease affects us all mentally - and offer that in addition to worrying about the obvious physical symptoms you consider therapy or perhaps meditation. I started therapy and have learned a lot of coping skills instead of  running with my anger, sadness and isolation which was making me a very poor person to be around.

Thanks for your reply. I was in therapy a few months ago, and my therapist didn't believe that I had celiac. Mainly because it was not diagnosed by a doctor. It was hard that not even my therapist believed me (along with a bunch of friends). I eventually did get tested by a doctor but it came out negative because I had been on the gluten free diet for about a year at that point. I did learn a few good skills but I think it would have been more effective if my therapist believed me. 

[moosemalibu]

Thanks for your reply. I was in therapy a few months ago, and my therapist didn't believe that I had celiac. Mainly because it was not diagnosed by a doctor. It was hard that not even my therapist believed me (along with a bunch of friends). I eventually did get tested by a doctor but it came out negative because I had been on the gluten free diet for about a year at that point. I did learn a few good skills but I think it would have been more effective if my therapist believed me. 

 

I'm sad to read that your therapist did not believe you. Did they ask you if you were officially diagnosed? I honestly would find a new therapist, tell them you have the disease and then if they ask if you were diagnosed you tell them yes. None of their business whether you got a traditional diagnosis or not. Their job is to help you cope. Ugh that is so frustrating. ::hugs::

[icelandgirl]

Hello, thanks for your reply. I've been gluten free for almost 2 years. 3 weeks ago was the first time I got glutened in months (and last night was the second time in months). That's another thing that makes this whole thing so infuriating, I thought I had it all under control and then one little mistake messes it up again. No I don't keep a food diary but I definitely should.

The food diary helped me to see that I can't handle a lot of fat...probably the result of no gallbladder...it was removed 2 weeks after celiac diagnosis. I was still having issues with bloating and D and so have been cutting out other things trying to figure out some more. It may help you to figure out some other things that may bother your system.

Mentally...coming on here and venting helps...I feel less alone in it when I do. But it is no doubt a frustrating disease...I think especially because all I was told by my Dr was don't eat gluten. Seems like it takes more than that for a lot of us.

[madminx]

I'm sad to read that your therapist did not believe you. Did they ask you if you were officially diagnosed? I honestly would find a new therapist, tell them you have the disease and then if they ask if you were diagnosed you tell them yes. None of their business whether you got a traditional diagnosis or not. Their job is to help you cope. Ugh that is so frustrating. ::hugs::

Yes he asked and i told him I was not officially diagnosed. Good idea! That's what I'll do when I get a new therapist. That way I can get some actual therapy and not just another person who doubts me. Thanks /hug. It really is frustrating. I'm glad this forum is here to get support from others who know how it is. 

[madminx]

The food diary helped me to see that I can't handle a lot of fat...probably the result of no gallbladder...it was removed 2 weeks after celiac diagnosis. I was still having issues with bloating and D and so have been cutting out other things trying to figure out some more. It may help you to figure out some other things that may bother your system.

Mentally...coming on here and venting helps...I feel less alone in it when I do. But it is no doubt a frustrating disease...I think especially because all I was told by my Dr was don't eat gluten. Seems like it takes more than that for a lot of us.

I think I have IBS on top of the celiac disease, or it's just my body still trying to heal from the damage the gluten has done. I can't handle a lot of fat either, and I have stomach issues when I get stressed out. It doesn't take much. I will definitely start a food diary. 

 

Yes it definitely helps to vent. I'm glad this forum is here to talk to people who actually get it. Thanks for your support. 

[frieze]

if you can't digest well, perhaps some enzyme therapy is in order.

[moosemalibu]

if you can't digest well, perhaps some enzyme therapy is in order.

I second digestive enzymes. They can be helpful. Have your stool checked by your doctor for fat as excessive fat can indicate a pancreatic disorder. Some Celiacs have pancreatic insufficiency secondary to celiac disease and it takes some gut healing to have it resolve and they are put on additional enzyme therapy (I believe... not 100% certain on it).

[Gemini]

You don't have to go to a doctor to be tested for insufficiency.  If you have a problem digesting fats, you will know it.  I always suggest taking OTC digestive enzymes because they help tremendously.  I have been gluten-free almost a decade and this year, stopped using them to see what would happen.  I was using them far less frequently than when first diagnosed.  Low and behold.......I don't need them anymore.  I am eating more foods than ever, a completely normal diet and everything goes through as it should, with no more issues eating fats!  This particular problem takes quite awhile to correct as fats as just so hard to digest.

[dilettantesteph]

I agree with others about the digestive enzymes.   I had diarrhea with high fat meals which resolved with the enzymes.

 

Tricia Thompson did a report on gluten contamination of spices: Open Original Shared Link

I couldn't get it to load, but maybe you can and maybe it'll be helpful.

 

I remember coming on here after reacting to things and trying to figure out what was going on.  People kept telling me it was something else because they ate that thing just fine.  Then my GI doctor told me that some celiacs are more sensitive to trace contamination than others. 

 

You can read the studies for yourself:

Open Original Shared Link

"After a baseline evaluation (t0), patients were assigned to ingest daily for 90 d a capsule containing 0, 10, or 50 mg gluten."

"One patient (challenged with 10 mg gluten) developed a clinical relapse."

The others did not.  Less than 10 mg of gluten has been defined as safe for the vast majority of celiacs.

 

Open Original Shared Link

"The study by Catassi et al also implies that minor gluten contamination was not harmful to most of the patients."

"As the study by Catassi et al (Open Original Shared Link) showed, celiac disease patients respond individually to small amounts of gluten. The individual variability denotes that the treatment should be individual too."

 

Some individuals experiencing symptoms on the gluten-free diet responded to a trace gluten contamination elimination diet: Open Original Shared Link

 

The good news about that is this: "Most patients who respond to a 3-6 month course of the GCED are subsequently able to return to a traditional GFD without return of symptoms."

 

I am hoping that will work for me too.  I just got glutened by accident so I'm back to day one of my 3-6 month course.