Does This Sound Like Celiac?

[Mecando92]

This is my first time posting and I'm really just wanting some information and help!

 

I am female, 21 years old.

 

I have had numerous blood tests checking for celiac along with other things at the time, and all of them have come back negative.

 

Ever since I was little I would always get back reflux and wind, so bad that it would wake me up at night. Ive also had "chicken skin" or. keratosis Polaris (Undiagnosed but all symptoms conclude that) which gets incredibly itchy at times. I also get itchy hands at random for no known reason.

 

Over the past 2 years I have had a constant pain in my lower right abdomen and no conclusion as to what it is, I also get severe pain across my entire stomach when it is pressed, the whole area is very tender and has been for at least one year. I also get sharp, pins and needle and burning sensations in my stomach at different times. I am nearly always bloated and constipated and then I get diarrhoea randomly (I have a feeling this is after a lot of milk, but I can't be certain at this point). When I do go to the toilet semi normally, I can never completely finish as it just won't come out and it is really smelly when it does. Colour wise it can be anything from almost black to extremely light brown. It is really gross!!!!

 

I have always had muscle and joint pain even from when I was little but parents always thought it was 'growing pains'.

 

My iron levels fluctuate from low to normal. After eating too much bread or wheat products I often feel bloated and a bit sick, so I try and limit bready items as much as I can.

 

This is all I can think of for now, just wondering if anyone has any insight and does celiac always show up in a blood test if you have it, or will you need further testing?

 

Thanks in advance!!

[SkyBlue4]

If you were eating gluten at the time of your celiac disease panel (I am assuming you had a full celiac disease panel) and it was still negative, you could have NCGS (non celiac gluten sensitivity). NCGS shares a lot of the same symptoms with celiac disease without the autoimmune piece.  

 

Have you been tested for lactose intolerance?  My son has that and it gave him a ton of GI symptoms before he was finally diagnosed. 

 

Btw, I have Keratosis Pilaris as well but I have not heard of it being directly linked to celiac disease. Perhaps someone else might have some more info on that though. The treatment my dermatologist recommended was to simply exfoliate and use a good jar of cream (Eucerin or Aquaphor) to moisturize daily. It really does help. 

[nvsmom]

Your symptoms do match with celiac disease and non-celiac gluten intolerance (NCGI). Because you have tested negative for celiac disease, it is probably more likely that you are dealing with NCGI but it could be latent (still developing) celiac disease or you could be one of the minority of celiacs with negative blood tests who would have a positive endoscopic biopsy (the so-called "gold standard" of celiac disease diagnostics).... Whew, that was long winded. LOL to answer your question: no celiac disease does not always show up in blood tests, but it usually does. celiac disease does not always show up in biopsies after positive blood work either.

Do you know what celiac tests you had done? If you post them, along with the lab's normal ranges, we could possibly advise you further.

Are you having an endoscopic biopsy done? If so, you'll have to continue eating gluten (just like for the blood tests) so you get accurate results.

If all testing is done, I would recommend trying the gluten-free diet for a minimum of three months, six would be better, to see how your health improves. Keep a food and symptom journal so you can track your progress.

You should probably drop dairy too since you suspect it is a problem for you. Many celiacs are lactose intolerant because the villi which produce lactase are destroyed. On the bright side, a good portion of those celiacs are able to once again tolerate dairy after 6 months once they have begun healing.

I hope you'll try the diet once testing is complete. I had symptoms like yours but did not know about celiac disease so ate gluten for another 20 years and developed more health problems. Going gluten-free at this point can only help you even if it is difficult to get used to in the first few months.

Good luck and welcome to the board.

[Mecando92]

:)Thanks so much for the replies

I am not ccompletely sure what I was tested for in my blood test but he said he was testing  me for celiac, now that the results are back and negative he wants to send me for an endoscopy, I'm not sure what that will show but hopefully it'll get me closer to feeling better!

 

As far as I know I have been tested for multiple allergies, including lactose intolerance because I also suffer from nasal problems and the doctor thinks these can be linked to my stomach problems if they are allergy based. Along with this I get sick ALOT like sore throat ear ache general feeling of being unwell and extreme tiredness, I know tiredness is linked to gluten intolerance/celiac, but can frequent sickness as well?

 

Yep been excoriating and moisturising nearly everyday! But one of my friends whose brothers both have celiac with severe symptoms (poor things! They are only quite young!) said she has the same skin condition and they've found out it can be linked to celiac... so maybe?? But yea all my research on celiac has never mentioned it so maybe its a new finding?

 

Thanks again! And sorry for the long reply!!

[nvsmom]

I get that general feeling of unwellness when I am having an autoimmune flare up. It feels like I am coming down with a flu (for a few weeks) but I never actually get sick. Some AI sufferers, celiacs included, even run mild temperatures.

Some celiacs have a rash called dermatitis herpetiformis, perhaps that could fit?

Good luck.