Test results VERY high, but I still need biopsy and help.

[CharlesBronson]

Hello,

This is my first post and I'm really tired and confused and have multiple health issues going on, so please bear with me.

I tested positive for one of the antibodies through a blood test (I'm not sure which one). I was told a score of 15+ is a positive correlation for Celiacs and my score was over 90. I was quite shocked as I don't have diarrhea or vomiting or something severe like that. I do have major fatigue, gas and bloating. So now I'm off for a biopsy to see if I have the disease or some other autoimmune issue. 

My health is already in a poor state after having tapered off benzodiazepines after 17 years and I've been working to recover these last two years, so a lot of my problems come from this.

I've tried to go gluten free but after a week or two weeks (I've tried multiple times) I just crash. Sleep all day. Can't sleep at night. More pain, heavy depression, irritability etc. Each time I quit gluten, I crash. I'm not sure if I actually have the disease, but my test score is SO HIGH I must have it right? 

 

Tired and confused. Please advise. Thank you very much. 

[kareng]

12 minutes ago, CharlesBronson said:

Hello,

This is my first post and I'm really tired and confused and have multiple health issues going on, so please bear with me.

I tested positive for one of the antibodies through a blood test (I'm not sure which one). I was told a score of 15+ is a positive correlation for Celiacs and my score was over 90. I was quite shocked as I don't have diarrhea or vomiting or something severe like that. I do have major fatigue, gas and bloating. So now I'm off for a biopsy to see if I have the disease or some other autoimmune issue. 

My health is already in a poor state after having tapered off benzodiazepines after 17 years and I've been working to recover these last two years, so a lot of my problems come from this.

I've tried to go gluten free but after a week or two weeks (I've tried multiple times) I just crash. Sleep all day. Can't sleep at night. More pain, heavy depression, irritability etc. Each time I quit gluten, I crash. I'm not sure if I actually have the disease, but my test score is SO HIGH I must have it right? 

 

Tired and confused. Please advise. Thank you very much. 

IF it is very high, then you probably have Celiac.  But I don't know what test you actually had.  If you are going to have a biopsy , you need to continue to eat some gluten every day .  

[CharlesBronson]

Oh really??? I was not told that! Thank you very much Kareng! I'm not sure the name of the test but I'll try to find out from my doctor. I just know it was an antibody test and I scored off the charts (not in a good way).

Do people have a hard time coming off gluten? Is it something that needs to be weaned or just stopped? I'll keep eating some gluten for now, but in the future should I wean off it? Is there such thing as a gluten protocol? 

[Posterboy]

1 hour ago, CharlesBronson said:

I just crash. Sleep all day. Can't sleep at night. More pain, heavy depression, irritability etc.

CharlesBronson,

Try some Magnesium Citrate with each meal or Magnesium Glycinate (if cost is not a problem) it will help many of your crash symptom's you have mentioned.

I had CFS and taking Magnesium Citrate with each meal helped me with sleeping all day.

you can also search for a magnesium thread on celiac.com there are several topics about it.

I hope this is helpful.

posterboy by the grace of God,

[ravenwoodglass]

The 'crash' you describe sounds just like my reaction to an accidental glutening. It is possible when you have trialed the diet that you were not aware of all the precautions we have to take. Reading the Newbie 101 thread will be quite helpful for you when you do get firmly gluten free. Be aware that there can be false negatives with endos so don't decide that celiac is not your issue if that should come back negative. Do keep eating gluten until the endo is done, if you are having one. In some cases doctors will diagnose based on symptom relief, antibody levels going down and the return of symptoms when accidentally (or purposely) consuming gluten.  I hope you get some answers soon and are able to start healing.

[CharlesBronson]

3 hours ago, ravenwoodglass said:

The 'crash' you describe sounds just like my reaction to an accidental glutening. It is possible when you have trialed the diet that you were not aware of all the precautions we have to take. Reading the Newbie 101 thread will be quite helpful for you when you do get firmly gluten free. Be aware that there can be false negatives with endos so don't decide that celiac is not your issue if that should come back negative. Do keep eating gluten until the endo is done, if you are having one. In some cases doctors will diagnose based on symptom relief, antibody levels going down and the return of symptoms when accidentally (or purposely) consuming gluten.  I hope you get some answers soon and are able to start healing.

Thank you Raven! I will read the intro posts and see if I’m missing anything. The weird thing is I just feel better when I eat gluten... It’s hard to wrap my head around. I sleep better, my mood is better and I’m in less pain. That’s why I was shocked to learn that my blood test came back so high. 

Honestly though my body has been so messed up from the benzodiazepine disaster that not much makes sense anymore

 

[Jmg]

44 minutes ago, CharlesBronson said:

Thank you Raven! I will read the intro posts and see if I’m missing anything. The weird thing is I just feel better when I eat gluten... It’s hard to wrap my head around. I sleep better, my mood is better and I’m in less pain. That’s why I was shocked to learn that my blood test came back so high. 

Honestly though my body has been so messed up from the benzodiazepine disaster that not much makes sense anymore

I think the very fact you notice such a response from eating gluten is a big signal that it's an issue for you. Most people wouldn't notice if they removed gluten from their diet but it's having a profound affect with you. Gluten can have an opiod effect on some people: Open Original Shared Link it can also cause anxiety. 

It may be that if and when you go fully gluten free you have to pass through a withdrawal period before you begin to experience the positive effects of the diet. Make sure testing is complete before you do this but if and when that time comes post here and there will be support and advice to help you through it. 

Finally, even if tests are negative give serious thought to trialling the diet. Some of us test negative but do far better without gluten in our lives. 

Best of luck!

 

[ch88]

I have heard other people on this forum talk about having gluten withdrawl symptoms. This does mean it is likely an issue for you.  Celiac disease can sometimes disrupt normal brain barrier function and hormone levels. It may take a while for the body to readjust back to normal. 

 I take fish oil, a complete gluten free mulitivitamin/multimineral supplement, magnesium, soy lecithin (a fat which makes up 30% of the brain), some glutamine protein powder (the preferred food for gut cells), eat lots of vegetables and try to reduce stress. 

[CharlesBronson]

3 hours ago, Jmg said:

I think the very fact you notice such a response from eating gluten is a big signal that it's an issue for you. Most people wouldn't notice if they removed gluten from their diet but it's having a profound affect with you. Gluten can have an opiod effect on some people: Open Original Shared Link it can also cause anxiety. 

It may be that if and when you go fully gluten free you have to pass through a withdrawal period before you begin to experience the positive effects of the diet. Make sure testing is complete before you do this but if and when that time comes post here and there will be support and advice to help you through it. 

Finally, even if tests are negative give serious thought to trialling the diet. Some of us test negative but do far better without gluten in our lives. 

Best of luck!

 

Thanks JMG. That makes sense. I do seem to be EXTRA sensitive to it.

[CharlesBronson]

33 minutes ago, ch88 said:

I have heard other people on this forum talk about having gluten withdrawl symptoms. This does mean it is likely an issue for you.  Celiac disease can sometimes disrupt normal brain barrier function and hormone levels. It may take a while for the body to readjust back to normal. 

 I take fish oil, a complete gluten free mulitivitamin/multimineral supplement, magnesium, soy lecithin (a fat which makes up 30% of the brain), some glutamine protein powder (the preferred food for gut cells), eat lots of vegetables and try to reduce stress. 

Yes I've been reading up on and it seems that some people have to taper off gluten. I'll have to be one of them, I guess. My biopsy is 8 months away, so do I continue eating gluten any time I want or just have a little each day? I feel like that's a long way to keep eating gluten if it is such a problem for me.

[cyclinglady]

12 minutes ago, CharlesBronson said:

Yes I've been reading up on and it seems that some people have to taper off gluten. I'll have to be one of them, I guess. My biopsy is 8 months away, so do I continue eating gluten any time I want or just have a little each day? I feel like that's a long way to keep eating gluten if it is such a problem for me.

You need to decide what is best for you.  If you go gluten free now, start back on to gluten two to four weeks prior to your endoscopy.  Be sure your doctor is kept informed.  Some celiacs have a very hard time reintroducing gluten into their diet.

Is your schedule flexible?  Consider calling the GI’s office to see if there are any cancellations.  If you take this approach, remain on gluten!  

[ch88]

I edited this post to make it clearer. 

Celiac organisations recommend both a blood test and a biopsy. It is necessary to eat wheat before the test to get an accurate result. 

Once you are diagnosed with celiac disease it is best to stop cold turkey.  The sooner you quit eating gluten the sooner you will feel better probably. I don't think there is any advantage to tapering off slowly.  

I wouldn't eat gluten for eight months before the biopsy. That sounds miserable and it could be dangerous. It up to you to decide what you want to do.  Is there a way to schedule the biopsy sooner?

[CharlesBronson]

2 minutes ago, cyclinglady said:

You need to decide what is best for you.  If you go gluten free now, start back on to gluten two to four weeks prior to your endoscopy.  Be sure your doctor is kept informed.  Some celiacs have a very hard time reintroducing gluten into their diet.

Is your schedule flexible?  Consider calling the GI’s office to see if there are any cancellations.  If you take this approach, remain on gluten!  

I'll do just that Cyclinglady. Yes my schedule is flexible so I'll get on the cancelation list and stay on a minimal amount of gluten for now. 

[CharlesBronson]

1 minute ago, ch88 said:

It is recommended by celiac organisations, that people continue eating wheat up until they are tested. That will insure a correct diagnosis. This includes the biopsy in the intestine and a blood test.  

Once you are diagnosed with celiac disease it is best to stop cold turkey.  The sooner you quit eating gluten the sooner you will feel better probably. I don't think there is any advantage to tapering off slowly.  

I wouldn't eat gluten for eight months before the biopsy. That sounds miserable and it could be dangerous. It up to you to decide what you want to do.  Is there a way to schedule the biopsy sooner?

I'm going to call and see if I can get on the cancelation list. It is pure misery. Thanks for saying that! The health care in my province is absurdly bad. 

Thank you all for the support. It really means a lot for me.

I'll see if I can get on a cancelation list and then I'll decide what to do about the gluten and how to proceed. 

[cyclinglady]

Here is a recommendation of a gluten challenge:

Open Original Shared Link

Again, if you can get a appointment sooner, stay on gluten.  If the thought of remaining ill for eight months is too great, then go gluten free and start back on gluten for two weeks (looks like they have shortened the time as they used to recommend 2 to 4 weeks).  Keep in mind the challenge can make you very sick or not at all.  Everyone reacts differently and symptoms s can change.