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Is This Celiacs? Mystery Illness.

dan95

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dan95 Rookie
dan95
Posted

Basically ive had this mystery illness for a couple years now and am still hurting for a diagnosis, i was tested for celiacs about 3 month ago which came back negetive (althought i was only eating gluten for 4 weeks prior to it as i tried gluten free for 2 weeks before). since then i ate gluten for about a month and then i decided to go on a healthy diet and cut out all common allengens, so i have now been gluten free for about 2 months. today i went to the doctors as my thyroid t4 results came back boarderline low, and asked to be tried on some thyroid meds, which i was denied as my gp wont go against the normal ranges. when i gt home i realised i had been gluten free for a few months so to test the celiac theory i ate a handful of cereal, since then ive been very itchy, mucusy, itchy eyes and felt generally worse than i have since i basically started this diet.

since i started the gluten, dairy free diet etc i have felt slightly better but not yet right, although today has reminded me how much better i am as i feel awful now. do you think this could be celiacs after all?

i am a 19 year old male and I have had these symptoms for 3/4 years that have slowly gotten worse before this diet and have been tested for nearly everything but nothing has come back positive.

my symptoms are

 

Fatigue

 

Muscle pain

 

sore lower back

 

stiff neck

 

sinus problems/ phlem in throat/ blocked nose

 

dry throat and mouth

 

red nose/ rosacea

 

cold hands and feet

 

anxiety

 

depression

 

Low testosterone at 13nmol

 

mood swings

 

excess urination

 

excessive thirst

 

prickly/itchy/burning legs and feet when stood still for a few minutes.

 

clay coloured stool / diarrhea

 

thyroid

TSH 1.6nmol

 

Free t3 5.3nmol

 

free t4 10.9nmol -----------?

 

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dan95 Rookie
dan95
Posted
  • Author

also, my b12 was quite low at 302ng/l, which i have been taking supplements for the last couple weeks, and also  my ferritin was also on the low side at 39ug/l

Solandra Rookie
Solandra
Posted

Your thyroid actually looks normal to me. My TSH was around 5 and doctors were ignoring it. Mine is currently .87 with meds, and Endocrinologists generally want it between 1-3, so you're good. As far as your symptoms, I would say some type of allergy, it may not be gluten but you may be reacting to wheat itself or another food allergen. You might want to see if you can get tested for food allergies.

dan95 Rookie
dan95
Posted
  • Author

my tsh is fine, its the t4 thats on the low side, normal range is 10-23 mines 10, ideally it should be towards the top end of that range. i dont really think i have a problem with the thyroid itself i believe the t4 problem is being caused by somthing else.... maybe celiacs?

 

i dont see how it could be a normal wheat allergy etc as ive been gluten, wheat, dairy, soy free and surly i would be symptom free after 2 months  free of all that, which i wasnt as i still have most of my symptoms, just less than they were 2 months ago. 

 

about 15 minutes after eating the granola that contained oats and rye i felt mucus in my throat, then about 2 hours after that i started getting itchy/dry stingy eyes, itchy skin, hot and feeling tired and ill.

Solandra Rookie
Solandra
Posted

No, a low T4 wouldn't cause Celiac. T4 is converted into T3. If you didn't have enough T4, your TSH would be high. Low T4 doesn't CAUSE anything, but thyroid problems can be CAUSED by Celiac. I think mine were. However, you could have them test for thyroid antibodies. My Hashimoto's Thyroiditis wasn't diagnosed off TSH or T3/T4, it was caught because I had insanely high thyroid antibodies. That would be a good thing to look at, now that I think of it, because Hashimoto's can make you bounce back and forth between anxiety/high energy to depression/low energy. I had a lot of those symptoms you're describing, and maybe a small 50mcg dose of Levothyroxine (synthetic T4) would make you notice a difference.

 

I don't think your 2 weeks without gluten would have been enough to change any test results, and if you're negative on that (I'd be curious to see the actual results), then the next thing you *could* do is a biopsy and see if you have intestinal damage.

dan95 Rookie
dan95
Posted
  • Author

no i said that i think somthing is causing the low t4, possibly celiacs. not the other way round. 

 

my results were

IgA - 1.27 g/l

"tissu transglutaminase IgA lev" - 0.7 u/ml

 

i have a print out of my gps screen of all my tests, and have noticed that under my results theres some defualt note for the gp's saying " test used for screening for celiac disease is now tTG"... which ive never been tested for???

Solandra Rookie
Solandra
Posted

TTG is the Tissue Transglutaminase so you were tested for that. I don't think Celiac would cause the low T4, your T3 and TSH are fine, BUT, like I said, you might want to have them test you for Hashimoto's disease, which is an antibody test, and that can give you some weird numbers like that. Your thyroid hormones vary from day to day, and you can only get a good look at where it's at over time.

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dan95 Rookie
dan95
Posted
  • Author

had a antibodies test before which was negetive. i think i may have non celiac gluten sensitivity. i have felt very rough today after eating gluten yesterday.

Solandra Rookie
Solandra
Posted

Could be, trial and error is another method a lot of people end up using. If it makes you feel crappy, don't eat it, you don't need to have a doctors approval. :)

dan95 Rookie
dan95
Posted
  • Author

yeah i think trial and error is my only option now. 

 

Im still feeling very rough and very mucusy, now 3 days after eating gluten. how long does this last untill i go back to how i was before i got glutened?

Solandra Rookie
Solandra
Posted

It can last a week or two for some people, up to a month for others. Some people say it takes 6 months to feel completely better.

dan95 Rookie
dan95
Posted
  • Author

ok hopefully ill be back to how i was in a few days. the last few days ive been very tired, constipated, abit dizzy, no appitite and very mucusy.

dan95 Rookie
dan95
Posted
  • Author

so so annoyed. just started getting back to how i was the last few days, then earlier today i ate some 'gluten free' tortilla chips that contained maize/corn flower and ive had another reaction and feel exactly how i did when i ate the cereal. so fastrating... another few days in bed. ahhhhh

Solandra Rookie
Solandra
Posted

Sounds like they either may have been contaminated or you also have a corn allergy. I would suggest getting some allergy tests and maybe try a paleo type diet and see how you feel. No dairy, beans, peanuts or grains, lots of veggies and fruits and meats. Basically it just cuts out common allergens.

dan95 Rookie
dan95
Posted
  • Author

definatly going to start paleio next week. i did try paleo before for two weeks and i did see an improvment but towards the end i becane very dizzy and ill. i think i wasnt getting enough calories. this time ill definatly get enough calories and see how it goes.

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