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
      126,432
    • Most Online (within 30 mins)
      7,748

    Rap
    Newest Member
    Rap
    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

    • mbrookes
      We don't have a Trader Joe in my town, but a small local grocer has started carrying a variety of Dr Schaar products. I do like all of his that I have tried.
    • knitty kitty
      Gluten can cause inflammation in the digestive tract and that includes the mouth.  Also, nutritional deficiencies can cause oral inflammation.  Cobalamine B12 deficiency and Niacin B3 deficiency can result in swollen irritated tongues and mouth sores.  Salt would definitely cause further irritation.... Like pouring salt in a wound....
    • Patty harrigan
      Absolutely disheartening. I always go for a certified product. Wondering if it’s worth the extra money and extremely disappointed in the organization for letting this happen.
    • Mnofsinger
      There was an old thread from 2011 that I came across but has been archived and I could not reply to it. I would like to reopen this discussion but really dive into a potential connection for a early "warning sign" for undiagnosed celiac people. Let me give some back story. I was diagnosed with Celiac disease in June of 2023. How long I had it before? I can't say for certain, because my wife and I had been on and off keto diets, which naturally I would cut out gluten containing food. However, there was an instance I went into the ER about 4 years ago for potential appendicitis, but that was ruled out as "nothing". Looking back it would be the pains in the abdomen from being "glutened".  Prior to being diagnosed I would always say our food needed less salt because it tasted to salty. My wife would always point out, "No, it could use more". Most people around me would say it's not too salty, and I would chalk it up to having a sensitivity to salty foods. I did not make this correlation until after my bloodwork had came back to normal range after eating a gluten free diet. In the span of four months I brought my tissue transglutaminase IgA results from a 45 down to a 4. After that, I did not go out of my way to focus on was my food "too salty" or not, I just never really mentioned that the food I was eating was too salty. In fact, I would find myself adding salt to foods. It wasn't until I had been glutened about 13 months into my gluten free diet, that the few days afterward I made a comment "This is too salty". As soon as those words left my mouth, I was like "Wait a second!", and said to my wife "what if all this time I thought the food was too salty was because of eating gluten?". Now, I know everyone's body reacts differently to to celiac disease whether someone is asymptomatic or if they have symptoms what symptoms do they have. I'm not saying I'm right, but I would be curious to know other's experiences and ways we could help other undiagnosed people get the proper medical treatment they need, by common early warning signs. So, on this old thread:   Some people explained the change was after, but I would be curious to know your experience! 1. My question(s) to the ones that experienced this after a gluten free diet, was it because you other more serious symptoms were occupying your mind while eating gluten that you never really noticed the "too salty" experience? 2. Is it possible that you had been accidentally glutened during your gluten free transition that spiked this reaction?       (Some context to this one: The reason I was able to get my numbers down so low in the 4 months after being diagnosed, was I went "over the top", We stopped going out to eat, we through out all our food, we threw out ALL of our cookwear/utensils/glasses/plates/cutting boards and I do mean EVERYTHING, and started with new, because I didn't want to be hindered by "hidden gluten". My wife tells me I have the tendency to go to the extremes 😄 ) Hope everyone finds this topic interesting and fun at the same time. So please, tell me your experience on this subject!
    • Scott Adams
      Since your symptoms are so severe and obvious, I can't really think of a compelling reason to get the confirmation, especially when weighed against some of the downsides of having an official diagnosis that are mentioned in the thread I shared. For people in the UK and other countries where their health care system offers food subsidies for those with celiac disease it does make sense--and most of those counties also have universal healthcare where the diagnosis would not be a factor.
×
×
  • Create New...