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Confused

krikrogus

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krikrogus Newbie
krikrogus
Posted

I have always been a rather regular guy. No medical issues whatsoever. A year ago I started being more and more fatigued. With this I had very strong depression, anxiety and I soon became an emotional wreck. Each and every day it is getting worse and the brain fog is so bad I can hardly work. The doctors have no idea what it is, although I have exopthalmos and Graves disease is suspected. I find this strange because TSH, T4 and T3 are completely normal and no antibodies are present. None...whatsoever. Anyway I come to this site in hopes of finding something. My ANA is 1:100 and I have had an AGA test which came out normal for IgA but IgG was 260!!. Is that not quite high? The doctor said it was fine. The transglutaminase came out negative and so did the biopsy. I am running out of hope here. If anyone knows anything, please reply. Hope I'm not crazy for life. 

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Irene Joanne Explorer
Irene Joanne
Posted

Would you consider the gluten free diet anyways? - you could have a sensitivity to gluten even if a biopsy was negative. 

ChiaChick Newbie
ChiaChick
Posted

@krikrogus

Hi and welcome.

I am new too. Sorry to hear you are experiencing these things. The good news is that there are a bunch of nice folks here who are kind of spirit and spend time helping people, so you have come to a good place. 

A couple of things: The more experienced here often ask for blood results to be posted, so it may help to do that. You can cover your name etc. Some further background information (ethnicity, age etc) can also help. 

Have you had a CT or ultrasound of your thyroid? Do you have other symptoms of Graves, such as rapid heartbeat, insomnia, tremors, muscle weakness, diarrhoea etc? You can google symptoms, there are more than I have mentioned.

I just want to clarify, when you mentioned that your biopsy came out fine, are you talking about a biopsy to check for Celiac?

The following is information I just looked up on reference ranges for IgG. Your results should have the reference range on them. You should be able to obtain a copy of your results if you do not already have them.

Table 1. IgG Subclasses (Open Table in a new window)

Age IgG Subclass 1 (mg/dL) IgG Subclass 2 (mg/dL) IgG Subclass 3 (mg/dL) IgG Subclass 4 (mg/dL)
         
         
Adults 422-1292 117-747 41-129 1-291
If you were biopsied for Celiac, and this is negative, you could certainly try eliminating all gluten to see if your health improves. This can take some time. There is a lot of information available on this website about recovery.
I would wait to hear from the people here who are far more knowledgable than I before going gluten free though. Have you researched Non Celiac Gluten Sensitivity (NCGS)? This is recognised, and can cause many of the symptoms of Celiac, but without the intestinal damage.
Sounds like at the minimum a good trial of gluten free is in order though.
I hope you are feeling better soon. 
krikrogus Newbie
krikrogus
Posted
  • Author

Yes absolutely! Only problem is I don't want to ruin any future tests by going gluten free. :/

krikrogus Newbie
krikrogus
Posted
  • Author
3 minutes ago, ChiaChick said:

@krikrogus

Hi and welcome.

I am new too. Sorry to hear you are experiencing these things. The good news is that there are a bunch of nice folks here who are kind of spirit and spend time helping people, so you have come to a good place. 

A couple of things: The more experienced here often ask for blood results to be posted, so it may help to do that. You can cover your name etc. Some further background information (ethnicity, age etc) can also help. 

Have you had a CT or ultrasound of your thyroid? Do you have other symptoms of Graves, such as rapid heartbeat, insomnia, tremors, muscle weakness, diarrhoea etc? You can google symptoms, there are more than I have mentioned.

I just want to clarify, when you mentioned that your biopsy came out fine, are you talking about a biopsy to check for Celiac?

The following is information I just looked up on reference ranges for IgG. Your results should have the reference range on them. You should be able to obtain a copy of your results if you do not already have them.

Table 1. IgG Subclasses (Open Table in a new window)

Age IgG Subclass 1 (mg/dL) IgG Subclass 2 (mg/dL) IgG Subclass 3 (mg/dL) IgG Subclass 4 (mg/dL)
         
         
Adults 422-1292 117-747 41-129 1-291
If you were biopsied for Celiac, and this is negative, you could certainly try eliminating all gluten to see if your health improves. This can take some time. There is a lot of information available on this website about recovery.
I would wait to hear from the people here who are far more knowledgable than I before going gluten free though. Have you researched Non Celiac Gluten Sensitivity (NCGS)? This is recognised, and can cause many of the symptoms of Celiac, but without the intestinal damage.
Sounds like at the minimum a good trial of gluten free is in order though.
I hope you are feeling better soon. 

Wow, thanks for a quick reply! I have had an ultrasound of my thyroid and it is very normal. I am a 20 year old male from Iceland and all of this started when I came home from a two week trip to Turkey. I do not have a goiter. My symptoms have all been rather hypothyroid-ish so no on the hyper- symptoms. The biopsy was for coeliac disease and I only have a letter from the doctor with the results, no reference ranges or anything like that. I have researched NCGS, but I would think these neurological symptoms are far too debilitating to be a sensitivity :/. I have tried being gluten free for 1 month and it only helped a little, so no significant improvements. Thanks for the kind words :) 

ChiaChick Newbie
ChiaChick
Posted

I have been researching NCGS for weeks, (which makes me still very much a beginner - I fully acknowledge that), and from what I have seen in the scientific reports and studies, it can be very debilitating. Celiac disease is an Immune Reaction to prolamins: gliadin (wheat), secalin (rye), and hordein (barley). In Non-Celiac Gluten Intolerance, it is said that the reaction is not to this, but to other components that are not tested for when testing for Celiac. Hence the reactions and damage in the body can still be quite harmful. The difference is that damage is not caused to the villi of the intestine in particular. This does not mean that damage is not occurring elsewhere in the body (e.g. your brain). More and more studies are showing links to gluten ingestion and serious disease, such as Parkinsons and other neurological problems. I would treat this with the seriousness it deserves. Not being a Celiac does not imply that you are necessarily able to eat gluten safely. There are some posts here that have some fantastic links listed by others.

There is a prevalence of Celiac amongst Northern Europeans.

Another thought about the fact that this started after a trip to Turkey... Have you been tested for Lyme Disease? Did they look for Parasites when they biopsied your stomach, or in your blood tests?

I am glad to see that you are taking your health seriously. Many young men don't. 

Wait and see what the experienced folks here have to say, and go from there in terms of starting gluten free. Most likely many of them are asleep at the moment given the time in USA and England.

krikrogus Newbie
krikrogus
Posted
  • Author
27 minutes ago, ChiaChick said:

I have been researching NCGS for weeks, (which makes me still very much a beginner - I fully acknowledge that), and from what I have seen in the scientific reports and studies, it can be very debilitating. Celiac disease is an Immune Reaction to prolamins: gliadin (wheat), secalin (rye), and hordein (barley). In Non-Celiac Gluten Intolerance, it is said that the reaction is not to this, but to other components that are not tested for when testing for Celiac. Hence the reactions and damage in the body can still be quite harmful. The difference is that damage is not caused to the villi of the intestine in particular. This does not mean that damage is not occurring elsewhere in the body (e.g. your brain). More and more studies are showing links to gluten ingestion and serious disease, such as Parkinsons and other neurological problems. I would treat this with the seriousness it deserves. Not being a Celiac does not imply that you are necessarily able to eat gluten safely. There are some posts here that have some fantastic links listed by others.

There is a prevalence of Celiac amongst Northern Europeans.

Another thought about the fact that this started after a trip to Turkey... Have you been tested for Lyme Disease? Did they look for Parasites when they biopsied your stomach, or in your blood tests?

I am glad to see that you are taking your health seriously. Many young men don't. 

Wait and see what the experienced folks here have to say, and go from there in terms of starting gluten free. Most likely many of them are asleep at the moment given the time in USA and England.

I have been tested for lyme and it came back negative.

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ChiaChick Newbie
ChiaChick
Posted
23 minutes ago, krikrogus said:

I have been tested for lyme and it came back negative.

How soon after you became unwell? It can take time to show in the bloodwork, and can need a second test. Just trying to tick all the other possibility boxes... Interestingly, I started to become unwell sometime after my trip to Turkey... Not sure if there is any correlation though. I think I have been unwell from birth to be honest.

krikrogus Newbie
krikrogus
Posted
  • Author

Um, I think it was like 5 months after my trip because it took a long time to convince the doctor. I think that's enough time for the borrelia bacteria to spread isn't it? I have been on 200 mg of doxycycline for two months just in case and that hasn't changed anything so I don't think it's Lyme.

SLLRunner Enthusiast
SLLRunner
Posted
9 hours ago, krikrogus said:

Wow, thanks for a quick reply! I have had an ultrasound of my thyroid and it is very normal. I am a 20 year old male from Iceland and all of this started when I came home from a two week trip to Turkey. I do not have a goiter. My symptoms have all been rather hypothyroid-ish so no on the hyper- symptoms. The biopsy was for coeliac disease and I only have a letter from the doctor with the results, no reference ranges or anything like that. I have researched NCGS, but I would think these neurological symptoms are far too debilitating to be a sensitivity :/. I have tried being gluten free for 1 month and it only helped a little, so no significant improvements. Thanks for the kind words :) 

Were you eating gluten prior to all testing? If you were not eating gluten, or you were "gluten light," the tests can come back as false negatives. 

krikrogus Newbie
krikrogus
Posted
  • Author
9 hours ago, SLLRunner said:

Were you eating gluten prior to all testing? If you were not eating gluten, or you were "gluten light," the tests can come back as false negatives. 

Yes I had only been 4 days on a diet with gluten when they tested me. The only problem is they won't let me take the bloodtests again :(

GFinDC Veteran
GFinDC
Posted

I think the usual thing is to be on a gluten diet for 12 weeks prior to testing.  But you might find an answer here:  Open Original Shared Link

Celiac can impact any area of the body, including the brain.  There is a thread on the forum somewhere about anger, quick temper, depression talking about effects on people.  There is also gluten ataxia, which is gluten related and affects the brain.

I think your doctor screwed up by testing you after only 4 days on gluten.

SLLRunner Enthusiast
SLLRunner
Posted
1 hour ago, krikrogus said:

Yes I had only been 4 days on a diet with gluten when they tested me. The only problem is they won't let me take the bloodtests again :(

Well, there you go. You have to be eating gluten 2-3 months (8-12 weeks) prior to testing, because it takes that long for any antibodies to build up. 

If your doctor will not allow you to eat gluten for the required time and then retest you, then I'd suggest finding a doctor who will. Your health is important. 

frieze Community Regular
frieze
Posted
  • have you been checked for acromegaly?

hm  i wrote this yesterday, but it did not post...  any way...

krikrogus Newbie
krikrogus
Posted
  • Author
On 4/26/2016 at 2:11 PM, frieze said:
  • have you been checked for acromegaly?

hm  i wrote this yesterday, but it did not post...  any way...

I have not. I'll talk to my doctor about it :)

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