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

Am I Being A Hypochondriac?


Mimako310

Recommended Posts

Mimako310 Newbie

I have had digestive issues as long as I can remember.  When I was 13, I had my first seizure that came while dealing with debilitating abdominal pain.  Multiple blood tests and CAT scans could not pinpoint a cause for the seizure, so I was sent on my way.  I continued to have boughts of severe abdominal pain (far worse than childbirth) usually accompanied by diarrhea.  A few required trips to the ER, where I was told it was "acute colitis" cause by stress, or a virus, or something else that got me sent home quickly without any real testing.  The pain was so bad I would get goosebumps over my entire body and be crying out loud in the bathroom.

 

At 20, I had one of these incidents but instead of diarrhea, I had pure, red blood coming out when I went to the bathroom.  I went to see a GI and was scheduled for a colonoscopy.  By the time the test came, the "flare" was over and the colonoscopy showed nothing, so I was again given the "acute colitis" brush-off and sent on my way.  At 24, I had another series of seizures following horrific abdominal pain, and this time I was admitted to the hospital.  They kept me for 5 days for every kind of neurological test you can think of, and found nothing.  Never once did they even mention any kind of GI testing.

 

About 5-6 months ago, my younger brother (13) was diagnosed wiith Celiacs after over a year of seeing specialist after specialist because his only symptom was a skin rash.  They went back and forth between fungal infection and psoriasis multiple times before finally testing for Celiacs.  Less than a month later, my older sister (32) was diagnosed with Lupus (not sure if other auto-immune diseases in the family history have any impact on ones chance of having Celiacs).
 

I'm now 30 years old and have 2 children.  For years I just assumed I had IBS, but looking back, I have dealt with migraines since I was 10 or 11, had very painful periods that were always regular, but since having my son 3 years ago have been all over the place, and I'm on Celexa and occasional Xanax for depression and anxiety, which again I have dealt with since my teen years.  Only recently have my headaches/migraines become a daily occurance and the fatigue I'm experiencing is overwhelming...I get 8 hours of sleep and still find it difficult to stay awake while driving my stepson to camp.

 

I just left a message to make an appointment with my doctor.  When my brother and sister were diagnosed, I asked for bloodwork for both, but I think she just did general antibody tests for any autoimmune (since it was 2 different diseases).  I'm not sure because I never saw the actual test results, but I was told everything was negative (I was also tested for Lyme's and had my thyroid levels checked because of the fatigue and hair loss I was experiencing).  I was told that my B12 levels were low and that could cause some of my symptoms, but I've been taking a supplement for months with no improvement.  I don't know if I'm being a hypochondriac and I've convinced myself of this after my siblings' diagnoses, but I seem to have a lot of the common symptoms.  Any feedcack?


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



Celiac.com Sponsor (A8-M):



bartfull Rising Star

You are NOT a hypochondriac!!!

 

Auto-immune diseases DO tend to run together, and celiac disease definitely runs in families. That is why anyone who tests positive should tell all first degree relatives to get tested.

 

Your symptoms sound celiac. Your family history indicates celiac. If you want to get tested, you need to keep eating gluten until testing is completed. There are a bunch of different tests that someone will be along to tell you about shortly.

 

In the meantime, read the "Newbie 101" thread here and then read as much as you can in other threads. Ask questions.

 

And know that it is NOT all in your head, that you are not alone, and that even if you run upon a clueless doctor who botches the tests (many of them do), you can always go gluten-free without a positive diagnosis. It will take a while, but if gluten is your problem (and I believe it is, although I am not a doctor), you will start feeling better and start to heal.

 

(((((HUGS))))) to you.

nvsmom Community Regular

Oh no, not a hypochondriac for sure! You can't fake pain, headaches,blood and diarrhea. You've listed a bunch of celiac symptoms, and have autoimmune diseases in your family - I recommend getting tested too... And testing your kids as well.

The full celiac panel is:

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

Total serum IGA

AGA IgA and AGA IgG

The first three tests will indicate that there is autoimmune damage being done to the small intestinal villi; the first test is a doctor favourite, the DGPs are newer and good for testing kids, and the EMA shows more advanced damage. Total serum IgA is a control test to make sure you make enough IgA for tests to be accurate, 5% of celiacs don't. the last test is for gliadin sensitivity and is thought by some to work for both celiacs and those with non-celiac gluten sensitivity (NCGS).

Make sure you eat gluten until the tests are done. I also suggest getting a copy of your labs as doctors occasionally slip up.

Good luck!

Mimako310 Newbie

Oh no, not a hypochondriac for sure! You can't fake pain, headaches,blood and diarrhea. You've listed a bunch of celiac symptoms, and have autoimmune diseases in your family - I recommend getting tested too... And testing your kids as well.

The full celiac panel is:

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

Total serum IGA

AGA IgA and AGA IgG

The first three tests will indicate that there is autoimmune damage being done to the small intestinal villi; the first test is a doctor favourite, the DGPs are newer and good for testing kids, and the EMA shows more advanced damage. Total serum IgA is a control test to make sure you make enough IgA for tests to be accurate, 5% of celiacs don't. the last test is for gliadin sensitivity and is thought by some to work for both celiacs and those with non-celiac gluten sensitivity (NCGS).

Make sure you eat gluten until the tests are done. I also suggest getting a copy of your labs as doctors occasionally slip up.

Good luck!

 

Thank you so much for the info!  My 3-year-old had an endoscopy done a year ago (totally heartbreaking!).  He has also dealt with GI issues since birth.  I breastfed for his first 6 weeks, and he would eat for 5 minutes, then curl up in a ball and scream bloody murder, then 20 minutes later he would be hungry again, and the cycle would repeat itself.  I had a barely 2-year-old daughter at the time and was completely overwhelmed, so I gave up on nursing and switched to formula, but the problem only got worse.  He was having bowel movements 6-10 time a day that were green and mucousy, and my otherwise happy-go-luck baby would scream in pain for 20 minutes after every feeding.  Repeated trips to the pediatrician were met with "He'll grow out of it" and "it's bothering you more than it's bothering him!" 

 

We changed pediatricians when he was 3 months old and he was immediately diagnosed with MSPI (milk-soy protein intolerance) and silent reflux and was put on a hypoallergenic (and extremely expensive!) formula and Zantac.  He was a different kid.  Then when we introduced solids, we discovered that he had an exaggerated gag reflex.  Anything with a taste or texture he did like would cause him to gag and vomit the entire contents of his stomach. 

 

Just before his second birthday, he started vomitting for no apparent reason maybe once or twice a week and would be completely fine afterwards...like it never happened.  Then his already picky eating started getting even pickier, and the pedi referred us to a pediatric GI becuase she was concerned about Eosinophillic Esophagitis - a very scary disorder involving allergic reactions to all sorts of food in the esophagus with no outward signs of allergy.  Just before he went for his endoscopy, we got the news about my little brother's diagnosis (So I guess it was actually a year ago that he and my sister were diagnosed).  We asked the GI to take some biopsies to test for celiacs since they were doing an endoscopy already.  Both tests came back negative, but now I wonder if he was too young, and hadn't had enough damage yet for a positive Celiac biopsy.  And he never had bloodwork for it.  The endocopy was done less than 2 months after his 2nd birthday :/

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,420
    • Most Online (within 30 mins)
      7,748

    Jen2014
    Newest Member
    Jen2014
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Jula, welcome to the forum. What possible benefit would having an official diagnosis give you at this point in your life? You already have medical test evidence that you are a celiac (antibody tests and genetic testing) and the symptom improvement when you went off gluten confirms what the testing already pointed to. Why on earth would you risk damaging your health by going back on gluten to get further confirmation of what you already have proved? You are now 15 years older than when you first went gluten free and your body will not tolerate the abuse it would back then. Call your GI doc and tell him you have decided to proceed as you are without the gluten challenge. If you want to go forward with the endoscopy to check for upper GI health in general, I can understand that but I certainly would not go back on gluten just to enhance the chance that you will receive additional confirmation of what you already know to be true. Are you having any other upper GI issues that you want to get scoped for? Having said all that, it sounds like you may need to double down on your efforts to eat gluten free and now have the freedom to do that since you aren't any longer caring for your parents.
    • Jula
      I will admit that when I was told I would have to eat gluten before getting the biopsy that would definitively diagnose Celiac for me, I was kind of psyched when I thought of all the things I would eat and enjoy since going gluten free in 2009. I was diagnosed that year after the results of tissue transglutaminase testing combined with persistent anemia (blood work also measured this) and a skin rash that definitely turned out to be gluten related (dermatitis herpetiformis) although it was never biopsied. For various reasons, I was never able to go for any follow-up testing, including the biopsy, as recommended by the diagnosing physician. I did, however, immediately go gluten free as much as humanely possible. There were a number of contaminations over the years as I was caring for parents who were not gluten free and who were going through enough so I did not feel good about depriving them of many of the things the loved to eat. I am about to have my first endoscopy, primarily to assess any damage that has been done to my small intestine over the years and to establish a baseline, but I thought it would also be a good time to do the biopsy and get the definitive diagnosis. My gastro doc agreed. But then his office called to say I would have to consumbe gluten for 6 weeks prior to the surgery. I freaked. I couldn't imagine feeling that bad for that long and couldn't figure out how I would function. I thought I would have to eat a meal or two, especially being that I have become more sensitive and can feel the impact of someone stirring my gluten-free pasta water with the spoon from their lots-o-g pasta. It usually takes 2-3 week to get rid of all of the symptoms, but if the dermatitis herpetiformis comes back, that remains for months or more, depending on the weather, my stress level (I tend to give in for the need to scratch the insane itch more) and a few other things. I spoke to my Gastro and we negotiated down to 7-10 days of gluten eating, but he was not sure it would give him all of the info he needs for the biopsy/diagnosis and I am increasingly worried that, judging how eating gluten shut me down, caused my asthma to get worse, my moods to swing wildly and to become so bone tired and joint sore that I couldn't make it up the subway stairs and so sat down and immediately fell asleep for about 10 minutes before someone shook me awake ---- all of which caused me to have someone look into what was going on with me, being that my doc at the time kept diagnosing different symptoms as issues and trying to give me more pills to treat them all. None of that helped. Going gluten free did. I also found out I have at least one of the genetic markers for celiace. I was adopted, so I didn't have that info before. I know this is not a unique story for people with Celiac pre-diagnosis. My question is: Will having an unquestionable diagnosis from the biopsy be worth ending this and starting next year feeling like crap, barely being able to function, likely depressed and a bit manic, and too tired and sore to move much at a time I have been battling to have my life back after being a very long term, 24/7 caregiver for my parents and getting lost in the serious shuffle of all that? Thank you to all of you who take the time to read and especially to those that take the time to respond and help me out of my vacuum! I need some perspective on this, please, because I am becoming increasingly anxiety-ridden about this but I want to do what will be the most beneficial to me in the long term. Thoughts?
    • trents
      Welcome to the forum, @ellieb13! The third party commercial celiac test kits are reliable but suffer from the same shortcomings that the average physician ordered celiac testing does. Namely, the number and kinds of tests included is pretty limited, usually just one or two antibody tests as opposed to a complete panel. Some who do have celiac disease have immune systems that respond atypically to the usual tTG-IGA testing that most docs order and so are missed. If IGG antibody tests would have also been ordered they might have been detected.  I could be wrong but I think there is also the issue that sometimes those with dermatitis herpetiformis do not have enteric involvement and do not produce serum IGA antibodies of the kind the tests are looking for. These people can only be diagnosed by skin biopsy during a dermatitis herpetiformis outbreak. Perhaps another forum member with more knowledge in this area can check my thinking here. Don't misunderstand me, I'm not trying to discourage you from opting for the commercial third party do it yourself kit. If you can afford it, go for it! I'm just trying to help you understand the limitations of such testing, particularly in your situation.
    • ellieb13
      Hi, I've feel like I've hit a brick wall. I've had eczema as a child and have mostly grown out of it, with an occasional flare-up (once a year at most). However, this time around none of the usual tactics work. I use a soap substitute, use 100% cotton clothing, even changed my mattress. The topical steroid given by the doctor usually does the trick after a few days but everytime i stop, it returns quickly. This doesn't feel like eczema to me as it is on my back, buttocks, neck and elbow whereas all my other flare-ups have mainly been on the backs of my knees and inside of elbow. My Grandmother is being tested for celiac disease in the coming days due to her "eczema" not responding fo treatment also. There are some celiac in the family but not close (grandfather's sister). Is this a possibility? I'd love to hear your thoughts and experiences. I would like to add that it's incredibly hard to get a GP appointment at the moment too so would the online home testing kits be a reliable testing option, or just a quick buck scheme?   Many thanks 😊 
    • knitty kitty
      @Barcino, Yes, do try cutting out dairy.  About half of people with Celiac Disease react to the protein in dairy, Casein, the same as to gluten because of similar protein segments.  Others have Lactose intolerance because their damaged intestinal lining, the villi, are damaged and can't produce the enzyme lactase which breaks down the sugar in dairy, Lactose.   Also, cut out processed gluten free foods.  Many gluten free processed foods use corn.  Some people with celiac disease react to corn the same as to the protein gluten because of similar-to-gluten protein segments of maize, the protein in corn.   Processed foods containing corn may also utilize microbial transglutinaminase to bind corn proteins together to improve texture.  Microbial transglutaminase is also used in dairy products like yogurt and ice cream to bind dairy protein casein together to improve texture.  Microbial transglutinaminase is not required to be listed as an ingredient because it is an enzyme considered to be part of the manufacturing process.  The increasing usage over the past couple of decades of microbial transglutaminase to cross link gluten proteins together in wheat containing products is suspected to be a trigger of Celiac genes, hence the increased numbers of people being diagnosed with celiac disease recently. Do consider supplementing with Benfotiamine, a form of Thiamin Vitamin B One, that has been shown in scientific studies to promote intestinal healing.  It also helps acne along with Niacin Vitamin B 3.  Vitamin D helps lower inflammation, and Vitamin C helps rebuild and repair damage.    I've had great improvement following the Autoimmune Protocol diet.  The AIP diet has been scientifically shown to improve intestinal health, too.  Developed by Dr. Sarah Ballantyne, a Celiac for her Celiac children.  It really does work quickly to reduce inflammation.  Although terribly strict,  improvement happens within a few weeks.   Hope this helps.  Keep us posted on your progress!
×
×
  • Create New...