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Hey, I'm writing to find out if there might be any truth in this theory I have regarding myself, my twin brother and my mother. I think all three of us might have Celiac. We're 22 and our mother is 54.
Symptoms include fatigue, stomach discomfort, bloating (the kind where you look like you're pregnant), constipation, gas, belching for all of us. These might not be related but I've also experienced anxiety, brain fog, depression, irritability, mood swings, night sweats, painful leg cramps while sleeping, a rash on my face that might be a form of dermatitis or eczema, tingling and numbness of extremities (pins and needles), a couple of white spots on my teeth, yellowish looking skin, feeling of incomplete evacuation after going to the toilet, back pain.
Looking back I also had something that resembled dermatitis sebborheic on my scalp with the flakes and itchiness, also I had a burning sensation on my right hand wrist a couple of years ago which I thought might be carpal tunnel syndrome at the time. My brother has also experienced some sort of panic attacks, breathing problems where he sort of takes a deep breath that seems like a sigh, migraines, and has complained about knee pain.


Might be worth mentioning I got diagnosed with bronchial asthma at the age of 3 and I had trouble with it until I turned 13, I also had a lot of allergies growing up. More recently at the start of the year my brother and I took a spirometer test and the doctor said we both have a predilection for asthma. Again, this might not be related but a couple of months I had a wisdom tooth bleed that wouldn't stop for hours, the dentist said I should take some blood tests because of how long it took for the bleeding to stop but it didn't happen again so I just forgot about it.
Also, growing up, I remember my mother was constantly tired, she would sometimes have these episodes where she threw up a lot and her blood test results were always "bad". On her last blood test Free T4 is low (0.88  0.89-1.76) with an average TSH (2.330 0.400 - 4.000 ) and her platelets are 107 (150-450) and have actually been lower before, she's had these low platelet numbers since she was 12 (or even earlier) and has never known the cause for it and had iron deficiency anemia around that age. She also has folic acid deficiency, a urinary tract infection and says she's got a sensibility towards milk which is why she never drinks it anymore. She also said she has biliary dyskinesia and biliary colic (this seems to be the english translation) and trouble with her blood coagulation (bleeding that's hard to stop).
Might not be related but my late grandmother suffered from gallstones, gallbladder and liver cancer.


I've tried talking to them about it but they mostly shrug it off and don't take me seriously, even though they complain about being tired all the time. Planning on taking blood tests sometime this week.
Is it actually possible that this could indeed be Celiac or am I going crazy? Is this worth investigating?

Edited by ohwowcharlie

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You are not Crazy. I ask the same thing but know the answer. You know it too. I think many people ask the same. It's time to validate yourself. No time for any apprehension or self doubt.Yes I very much think it is possible you have celiac. Your first paragraph sounds all too familiar. Please try and get this diagnosed quickly and as easily as possible. The earlier you stop this train the better. I tell my husband as I see the belly you describe on people as I drive down the street I think celiac or NCGS , do I cross that line and tell that complete stranger they should be tested for celiac? I haven't yet. (I had that belly and get it with 35 minutes of a being glutened now that I am gluten-free) 

So yes I support you on your journey, know you are not alone. I am 20 years older than you still awaiting diagnosis but went gluten-free and refuse to eat it for endoscopy. I took my husband's advice as an advocate for myself. The start of the symptoms snowball began in my 20's so regardless of your mom and twin, Do it for yourself. It appears as if the medical community is getting better at recognizing it now . So please at 22 follow your instinct .I tried but failed every decade the medical world just couldn't see at that time in my case. For you I hope they get it right so you avoid additional decades of misdiagnosis and delay. Best of luck and to your health.

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Don't let celiac ruin your most productive years like it ruined mine!   Get tested!!   Gluten rips up the gut, causing enteropathy/"leaky gut" that provokes autoimmunity.  When you mention your mom's low T4 and your anxiety/depression/brain fog/etc., all I can think is "Hashimoto's"!  Which is followed by hypothyroidism, eventually.  In addition to the standard celiac tests like GAb and TTG, your entire family should have comprehensive thyroid testing that includes TSH,FT3,FT4,rT3,TPOAb,TGAb.   The *Ab antibody tests will show you whether you are a Hashimoto's family (and don't believe the antibody threshold, any level of antibodies is dangerous).   Your other alternative to nailing down diagnosis is specialized fecal testing that can tell you that your digestive process has gone off the tracks; it is offered by enterolab.com and others.

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On 5 June 2016 at 9:52 PM, ohwowcharlie said:

I've tried talking to them about it but they mostly shrug it off and don't take me seriously, even though they complain about being tired all the time. Planning on taking blood tests sometime this week.
Is it actually possible that this could indeed be Celiac or am I going crazy? Is this worth investigating?

No one here can diagnose you obviously, but so many of the symptoms mentioned above fit the celiac profile, well done on looking into this and don't be disheartened if your mum and brother aren't receptive. Get your tests, if they're positive they will both be screened in any case.

If you test negative give serious thought to trialling a gluten free diet in any case. I had negative blood and biopsy, but gluten has a profound effect on me regardless. The good news is nearly all of it has stopped since I went gluten free. Just make sure you don't change your diet until your doctors have finished the testing process.

so, worth investigating? Definitely! Could it be celiac? Yes! Are you going crazy? I'll plead the fifth ;) 

 

Good luck!

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