Jump to content

  • 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

Partially Tested, Still Skeptical

Guest anonymous4698873

By Guest anonymous4698873
in Celiac Disease Pre-Diagnosis, Testing & Symptoms

Recommended Posts

Guest anonymous4698873
Guest anonymous4698873
Posted

Beginning a few months ago, I thought I was just gluten intolerant. Then I started to really question what was wrong with me. Since I was a baby, I had intolerance to dairy. They would make us drink milk at school, and they (the government, basically) told us it was essential to our health. Yet, I was always in the health room after lunch in pain. Everyone thought I was faking it because I didn't like being at school. It wasn't until I entered high school that I diagnosed myself as lactose intolerant. I never had those stomach aches, gas, etc. again as long as I didn't consume dairy. Since I was 20, I lost a lot of weight. My BMI is 19.0, but it was 18.2 when it first happened. To maintain my weight, I don't exercise, and I overeat. This is not how things are supposed to be! I miss working out! I don't like worrying about eating when I don't want to. I'm pale, I'm cold, I can't sleep because I get a pins-and-needles feeling all over my body, sometimes I'll lose feeling in a toe, I've been told I look unhealthy, or like a ghost, I have no energy anymore, my anxiety, anger, and other mood issues are through the roof. I developed borderline personality disorder (ironically, probably, and partially stems from the emotional neglect of my parents about my physical and mental health for all those years. Saying it's all in my head, etc. I actually cried 3 times today, first time in months. My mom doesn't believe anythings wrong with me. I stayed up all night interpreting my DNA results to try getting her to believe me. We've been fighting all day. She always tries to minimize my problems and calls me a bypochondriac). My hair is becoming finer and possibly even thinning. I was diagnosed with ADD, bipolar, and psychosis. At about 17, I developed acid reflux - lots of throat-related issues like clearing it a lot, and post-nasal drop. All of this happened at the same time, basically. About 1 year ago. I had a genetic test done. There are two haplogroups related to celiac, I have the HLA DQA1 version (the most common). There are 13 (I believe) SNPs related to celiac disease. I have 12. My cousin had a similar issue and did NRT. And she's never felt better. They didn't give her diagnoses but told her to watch her dairy intake. What are your thoughts? Is it safe to assume I have the disease? I want to be myself again, but I don't know how to do that unless I know what's causing the problem. And please please please don't tell me to see a doctor, because some of us can't afford it, nor can we afford putting another medical issue on our profile. Thank you!

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

You do sound like you could be one of us. Idealy you need to be diagnosed. There are blood tests for celiac that you can order yourself and have drawn at a local lab and then sent to your doctor.  It is important to have a diagnosis if you are ever hospitalized and to get needed testing for vitamin and mineral levels. You may find some of your other diagnoses were actually celiac related. Celiac can impact brain function and mood and many get relief from stuff like depression etc with the diet.  You do have the option of going strictly gluten free without a diagnosis but if you do you would have to do a gluten challenge for up to 3 months before you could be tested. It can be harder to get the support of loved ones and roommates etc without a diagnosis as it also impacts their lives. What ever you choose to do I hope you can get some relief soon.

Guest anonymous4698873
Guest anonymous4698873
Posted
On 2/17/2018 at 3:27 PM, ravenwoodglass said:

You do sound like you could be one of us. Idealy you need to be diagnosed. There are blood tests for celiac that you can order yourself and have drawn at a local lab and then sent to your doctor.  It is important to have a diagnosis if you are ever hospitalized and to get needed testing for vitamin and mineral levels. You may find some of your other diagnoses were actually celiac related. Celiac can impact brain function and mood and many get relief from stuff like depression etc with the diet.  You do have the option of going strictly gluten free without a diagnosis but if you do you would have to do a gluten challenge for up to 3 months before you could be tested. It can be harder to get the support of loved ones and roommates etc without a diagnosis as it also impacts their lives. What ever you choose to do I hope you can get some relief soon.

Thank you for your reply. I am seeing the campus NP this week. I'm getting all the tests they offer because they are only like $10 for the blood panel and the one that tests vitamins and stuff. Looking at my records from the past, it is worth noting how fast I am approaching hypothyroidism. Last time I was tested, my TSH was .71. That was 4 months ago. And I also have low BUN and creatinine, which I just noticed because the doctor didn't point it out. She only pointed out my slightly low potassium level and said the rest was normal haha. Those two are both serious and related to kidney and liver. You seem knowledgeable. Are kidney and liver problems characteristic of celiac? Otherwise I can create a new topic on this.

ravenwoodglass Mentor
ravenwoodglass
Posted
On 2/25/2018 at 12:01 AM, fletcher96 said:

Thank you for your reply. I am seeing the campus NP this week. I'm getting all the tests they offer because they are only like $10 for the blood panel and the one that tests vitamins and stuff. Looking at my records from the past, it is worth noting how fast I am approaching hypothyroidism. Last time I was tested, my TSH was .71. That was 4 months ago. And I also have low BUN and creatinine, which I just noticed because the doctor didn't point it out. She only pointed out my slightly low potassium level and said the rest was normal haha. Those two are both serious and related to kidney and liver. You seem knowledgeable. Are kidney and liver problems characteristic of celiac? Otherwise I can create a new topic on this.

Sorry I haven't replied sooner. Busy weekend at work. Good to hear you will be able to get blood work done. As to kidney and liver issues they can be seen. Liver panels often go back to normal after the body heals.  I am not sure about kidney issues but I do know I had a great deal of edema prediagnosis that went away gluten free. Don't know why though. With some tests there can be some variation is what is normal for someone.  If someone is ill, for example, that can throw off some blood work that will normalize once they are better. A couple points below scale might not be concerning to a doctor. They might want to just repeat those tests a short time later to see if the levels are more off. 

I hope you get some clear answers and are feeling better soon.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. chrisinpa
      - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

      Maybe they can attribute certain skin conditions to either being susceptible to getting Celiac......or the other way around....but I have to ask if certain people are prone to Celiac because of genetics and some people aren't. It's kind of the same thing as what came first.....the chicken or the egg.?
    2. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      My journey is it gluten or fiber?

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering...
    3. trents
      - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Issues before diagnosis

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac...
    4. trents
      - trents commented on Jefferson Adams's article in Other Diseases and Disorders Associated with Celiac Disease
      6

      Celiac Disease Patients Face Higher Risk of Systemic Lupus

      What kind of practitioner did the blood test? Was this a medical doctor, a naturopathic doctor, a GI doc? I would certainly follow up with them and ask why they advised you not to eat red meat. I mean, it could be something like they, themselves, are a vegetarian and give that advice to everyone. Have you had an endoscopy with biopsy of the small bowel...
    5. knitty kitty
      - knitty kitty replied to EndlessSummer's topic in Food Intolerance & Leaky Gut
      2

      Dizziness after eating green beans?

      @EndlessSummer, You said you had an allergy to trees. People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits. Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease. Switching to a low histamine diet for a while can give your body time to rid itself of...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,691
    • Most Online (within 30 mins)
      7,748
    4Nic8ion
    Newest Member
    4Nic8ion
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      Dizziness after eating green beans?

      By knitty kitty · Posted

      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
    • sha1091a
      Issues before diagnosis

      By sha1091a · Posted

      I found out the age of 68 that I am a celiac. When I was 16, I had my gallbladder removed when I was 24 I was put on a medication because I was told I had fibromyalgia.   going to Doctor’s over many years, not one of them thought to check me out for celiac disease. I am aware that it only started being tested by bloodwork I believe in the late 90s, but still I’m kind of confused why my gallbladder my joint pain flatulent that I complained of constantly was totally ignored. Is it not something that is taught to our medical system? It wasn’t a Doctor Who asked for the test to be done. I asked for it because of something I had read and my test came back positive. My number was quite high.Are there other people out here that had this kind of problems and they were ignored? 
    • trents
      Dizziness after eating green beans?

      By trents · Posted

      Welcome to celiac.com, @EndlessSummer! Do you react to all vegetables or just specific kinds or families of them? What you describe with green beans sounds like it has an anaphylaxis component. Like you, walnuts are a problem for me. They will often give me a scratchy throat so I try to avoid them. Does it matter if the vegies are raw or will-cooked in how you react to them?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.