Just Few Symptoms

[dirdam]

Hi everybody,

first of all, I would like to thank the people in this forum, because I have learnt a lot reading it.

I ended up in this forum doing research about my personal situation, which I am going to explain without further ado.

Male, 30 years, having feeling tired and exhausted since 21 as far as I remember. From being a quite energetic person, me health has been degrading since then. First I thought I was becoming old, I used to smoke also so I thought everything was normal.

However, last year, my health went down even more. I passed by an stressful situation and I ended up with the same bad feeling I used to have but extremely increased. I had to quit my job, and only then is when I went to the doctors the first time.

From 21 to 29, I had:

Fatigue (all day long, no rest feeling after wake up)

Brain fog (I felt as every day I had less intellectual capacity)

Irritability

Weakness all over the body

Severe back pain without apparent reason or damage

Little bit depressed, I think because of the aforementioned.

Anyway, I managed to "live" my life during those years, which was limited basically on going to work and rest at home.

At 29, when I had that crisis, which longed around 9 months, and even I quit my job:

Extreme fatigue - I barely managed to stay awake. I was all day lay down at home.

Brain fog (I was unable to do simple thinking or even remember things I was very used to remember)

Numb feeling in legs and arms after waking up

I was sleeping around 12-14 hours day

I started to visit doctors, and I got dozens of different test. I cannot even remember how many doctors I visited, or tests I got but summarizing they found some things:

- Osteopenia (Moderate-severe) at age of 29. Low mineral density at bones.

- High iron levels. I got a genetic study and it was negative for hemochromatosis. I went for bloodletting and returned to normal.

- Some autoimmune markers high. At this time, they thought I could be suffering Lupus. I got corticosteroids with no effects. The doctors withdraw the treatment after a couple of weeks. After some time, those autoimmune markers returned to normal.

- High transaminases. I got also an eco which showed just mild fat liver.

After 9 months of recovery (no treatment) I returned to "normal" level of tiredness (which it was not normal in fact). I got a new job, but I am in the same situation of the beginning, so feeling very sick, but apparently normal under the doctors view.

So all hopes that I had of that crisis banished, because although I thought I was finally going to be diagnosed of something, I was not :-(

Few days ago, doing more and more research, I read about Celiac disease. As it has happened before, I found some similarities with what I was suffering: disease commonly misdiagnosed or not diagnosed at all, fatigue, osteoporosis, brain fog, etc.. etc... So I ordered a BioCard Celiac test. Again, I hoped to get a positive, but the result of the test was negative. I have took it 1 hour ago.

I guess there are other details, but I do not want to bore you, so I am going to go directly to the questions:

- I have read that those home test could not be very accurate in some cases. Do you think that I should go to doctor to take a full celiac panel test?

- Have you ever known/read/heard a case similar to mine?

Any comment, suggestion, or recommendation will be very appreciated.

Thank you so much :-)

PS: Sorry for my english, I am not an english-speaker.

[Korwyn]

The blood tests are known to have a high false negative, so I would suspect that 'home test' kits would have an even higher false negative and be highly suspicious. I would certainly see if you can get a complete blood workup which should consist of the following tests:

Anti-tissue Transglutaminase Antibody (tTG)

Anti-Gliadin Antibodies (IgA and IgG)

Total Serum IgA

Anti-endomysial antibody test (EMA-IgA)

Deamidated Gluten Peptide (DPG-IgA and DPG-IgG)

As far your question if I have ever known or heard of a similar case, yes. And you will probably find out from many of them first hand very soon.

[dirdam]

The blood tests are known to have a high false negative, so I would suspect that 'home test' kits would have an even higher false negative and be highly suspicious. I would certainly see if you can get a complete blood workup which should consist of the following tests:

Anti-tissue Transglutaminase Antibody (tTG)

Anti-Gliadin Antibodies (IgA and IgG)

Total Serum IgA

Anti-endomysial antibody test (EMA-IgA)

Deamidated Gluten Peptide (DPG-IgA and DPG-IgG)

As far your question if I have ever known or heard of a similar case, yes. And you will probably find out from many of them first hand very soon.

Hi Korwyn,

first of all, thanks for taking the time to answer my post.

Regarding what you mentioned, I am sure I am going to visit the doctor, but I am still thinking how to convince him/her to get those test. Good thing is that I have a couple of chances, private sector and public. I am going to do further research to present the case as clear as I can to get no rejection to the tests.

I am eager to hear the opinion of those people. Hope they pass by soon :-)

many sincere thanks!!

[ciamarie]

I wasn't aware there is a home test. It's probably not like a home-pregnancy test where there's a specific hormone that it can test for. I'm not sure how important it is for you to have an official diagnosis, but it sounds to me like your symptoms point to a possible gluten intolerance. One thing you could try is to avoid gluten for at least a couple of weeks and see how you feel. I know as far as 'brain fog' and feeling tired even after sleeping all night, I had improvement within days. Other issues are taking longer.

However, if you feel better without gluten, you'll need to go back to eating gluten for any test to be helpful, if you want a diagnosis. That's why I asked how important an official diagnosis is. Apparently in some parts of the world, there are some gluten-free foods that are only available with a prescription, and for that you need a diagnosis. I'm not sure if that's helpful, but you wanted other opinions so I thought I'd add mine.

[dirdam]

I wasn't aware there is a home test. It's probably not like a home-pregnancy test where there's a specific hormone that it can test for. I'm not sure how important it is for you to have an official diagnosis, but it sounds to me like your symptoms point to a possible gluten intolerance. One thing you could try is to avoid gluten for at least a couple of weeks and see how you feel. I know as far as 'brain fog' and feeling tired even after sleeping all night, I had improvement within days. Other issues are taking longer.

However, if you feel better without gluten, you'll need to go back to eating gluten for any test to be helpful, if you want a diagnosis. That's why I asked how important an official diagnosis is. Apparently in some parts of the world, there are some gluten-free foods that are only available with a prescription, and for that you need a diagnosis. I'm not sure if that's helpful, but you wanted other opinions so I thought I'd add mine.

Thanks for your opinion, much appreciated.

I think I am going to take the blood tests before I go through a gluten-free diet. I am managing to get an appointment as soon as the next week for that. While I am waiting for the result,s I will start the gluten-free diet. I am wondering how difficult is going to be to do it. Well, since I started to research about this, I have been checking all processed aliments I am eating and most of them are already gluten-free, even without buying them this way in purpose.

thank you again!!!

[dirdam]

By the way, another symptom that I forgot, and I am suffering from long time ago, is dermographism, which makes me skin so sensible that any scratch turns it red and cause urticaria in my skin. I got quite surprise when I read about this, and how somehow it might be related with celiac disease and other autoimmune disorders.

best regards!