Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Just Few Symptoms

dirdam

Recommended Posts

dirdam Newbie
dirdam
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Korwyn Explorer
Korwyn
Posted

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 Newbie
dirdam
Posted
  • Author

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 Rookie
ciamarie
Posted

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 Newbie
dirdam
Posted
  • Author

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 Newbie
dirdam
Posted
  • Author

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!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,196
    • Most Online (within 30 mins)
      7,748
    Dreamstar
    Newest Member
    Dreamstar
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Bread choice for a newbie

      By Kris2093u4 · Posted

      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Blood results

      By trents · Posted

      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...