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

gene0

Recommended Posts

gene0 Newbie

I would just like to tell you about my recent medical history and I would like to know if any confirmed celiac cases could give me some advice.

As of March of 2012 my health went downhill. One morning I felt like I was coming down with the flu, I waited for a few days and I didn't feel better, so I went to the doctor and was diagnosed with pneumonia in my left lung. I took antibiotics and I felt fine for a month, then one day I just felt exhausted. I went back to the doc, got more antibiotics, and I felt better for a few more weeks. Then I got sick a couple of more times with bronchitis and ear infections. After a bunch of tests I was finally diagnosed with chronic or recurrent epstein barr virus. All of my lymph nodes (and spleen) were enlarged, I was exhausted, and I felt an extreme and unnatural amount of anxiety. The doc put me on antibiotics for a while, in case I had been exposed to Lyme disease. Fast forward a few months and I still have fatigue, brain fog, and abnormal blood work. The physical exhaustion has gotten better as has most of the strange anxiety. (I can tell you that the anxiety was something physiological, it was not a normal mental thing). I thought I had encephalitis or something. However, I still can't concentrate on things for very long without feeling worn out. My joints all make loud popping and cracking sound. Its like my bones are made of old creaky wood. This is the most unsettling symptom to me besides the brain fog. Does anyone else have creaky joints? I briefly had eczema on my forearms last spring, which I had never experienced before. I have a splotchy rash that sometimes appears on my chest, neck, and a bit on my face.

After a few months of having mono, and still no change in symptoms I tried a gluten free challenge on a whim. I tried to cut out gluten as best as I could. Some days I did feel better, but other days I felt like crap again. When I did go off gluten, I felt like my stomach was messed up (Which I attributed to all the antibiotics I had taken in the past) Prior to this I really didn't have any GI issues. So I asked my doc about celiac, and he acted like I was another hypochondriac crazy patient. He tested me anyways, but it came back negative.(However I probably hadn't eaten any gluten for a week before the test.) oops.

Prior to all of this, I was pretty healthy, a bit skinny, but I had a huge appetite. Now I feel like an old man. As far as family history, my mother and some others have hypothyroism, my uncle had colon cancer at a young age, and my grandma had rheumatoid arthritis. Autoimmune diseases do run in my family(probably on both sides). No one with known celiac though.

I also saw a rheumatologist based on my bloodwork, and he said it was a possible lupus case. However, I doubt this as I am a white male and I would assume that celiac would probably be 100X more likely than lupus. (I calculated this based on stats.) Also, my ANA was negative, and I don't think my rash is the same as the butterfly rash. Here are some of my blood test results. I was wondering if any of this is in line with celiac disease. I am really hoping its not lupus. Or some sort of infection (I lived and worked outside in new mexico last year, and I thought it could be valley fever at first, although that came back negative.)

I know that the bloodwork doesn't appear promising, but I swear that I wake up sometimes and almost feel 100% normal. And this feeling seems to coincide with a meal that I ate the night before such as stirfry, corn tacos, or baked chicken and mashed potatoes that didn't have any gluten in it. I have to make a new appointment with a new rheumatologist, since I recently moved because I ended up not enrolling in graduate school like I had planned on doing.

Neutropenia - borderline low

WBC - low

RBC - normal

Low complement c3 and c4

Lupus anticoagulant: PTTLA, and hexagonal phase phospholipid - high

anti-dsdna - mildly elevated

ANA - negative

EBV antibodies

Hepatitis - neg

lyme - neg

Sjorgens, anitsmith, RNP, anticardiolipn,antiscleroderma, anticentromere, CRP - all negative


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



Celiac.com Sponsor (A8-M):



GottaSki Mentor

Welcome!

Do you know which celiac antibody tests were ordered? Did your doctor order nutrient testing? Celiac Disease prevents absorption of nutrients which can lead to all of the symptoms you list.

Have you had any thyroid testing? Many doctors test only the pituitary hormone - thyroid stimulating hormone (TSH). Request Free T3, Free T4 and thyroid antibodies to properly evaluate your thyroid.

I believe you should be evaluated by a GI that specializes in Celiac - do not remove gluten until all Celiac testing - including possible endoscpic biopsy - are complete. Take a written list of your symptom progression along with photos of skin issues to your appointments.

Do establish care with a new Rheumalogist as well. Autoimmune disorders tend to run together so it is important to have as many oppinions as possible when attempting to figure out a complicated puzzle.

Keep a food/symptom log.

Take pictures of skin issues.

Keep looking for answers - doctors can be dismissive when the majority of test for non-specific symptoms come back "normal". It is up to you to push for answers.

Good luck to you :)

gene0 Newbie

Thanks for the advice, I will ask about the other tests at my next appointment. My thyroid was fine, but they only took blood for the basic test. Also, I am not sure what celiac test was ordered, the doctor just told me it was negative.

"Normal" - thats all I want out of life right now, haha.

Thanks again, your response was very appreciated

Gene

rosetapper23 Explorer

I agree that your thyroid needs to be tested. Hypothyroidism can cause aching/popping joints and bones, fatigue, mental fogginess, etc.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,188
    • Most Online (within 30 mins)
      7,748

    Leeila
    Newest Member
    Leeila
    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
      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
      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
      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
      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
      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...