Do you think I have Celiac?

[True Blue]

Morning from Oz…..

I’m confused, overwhelmed and anxious about getting some blood test results that indicate I may have celiac disease.

For starters I’m 48 and, as far as I thought, never presented with any symptoms?  I have been going to the doctors for the last few months trying to figure out why I’m so tired all the time. I thought it was an age thing or, being a secondary school teacher, maybe that was the reason? I’ve had a home sleep study – results next week. All my blood test results are indicating that I’m not absorbing any goodness from my food (I think I eat a healthy, balanced diet) and my iron was cause for concern so I’ve been for an infusion, another one in 10 weeks. I’ve had 3 Vitamin B-12 injections so far and am taking supplements for calcium, vitamin D and folate.

These are the results that have me really concerned:

Gliadin IgG 230.0 U/mL (‹7.0)

TTG IgA ›128.0 U/mL (‹7.0)

Results are highly suggestive of coeliac disease. Small bowel biopsy is recommended to confirm the diagnosis.

Sooooo, I’m booked in for a biopsy on Monday 19 but was hoping someone could allay my fears. Is it feasible that I’ve gone my whole life not knowing I have celiac disease? I’ve been doing lots of research and some of the jigsaw pieces are falling into place – I didn’t have my first period until I was 18, and then didn’t have another until a year later. My husband and I had trouble conceiving and the consultant was reluctant to say I had PCOS as I only had irregular periods (not overweight or any excess hair) could it be celiac disease? I don’t have any family history to check any illnesses as I grew up in foster care. My own children are now 18 and 16 – if I have celiac disease, do they?

Trying not to jump the gun but can’t help fixating on all the foods I may no longer be able to eat!!!

Many thanks for any help you can offer, Di :-)

[GFinDC]

Hi True Blue,

Yes, you can have celiac disease with no digestive issues.  At least for a while, but symptoms will always pop up somewhere eventually.  You might get a skin rash called dermatitis herpetiformis (DH) instead, or gall bladder problems, or joint pain, or trouble walking or concentrating or remembering things, etc.

Your children won't automatically get celiac disease.  They may develop it at some point if they inherited the genes for it though.  They should be tested for celiac disease every year or two.

Go ahead and eat all those foods you are worried about now.  Until you are done with all celiac testing and have your test results you shouldn't modify your diet.  The endoscopy should include 4 to 6 biopsy samples for microscopic examination.

Going gluten-free is a learning experience and we all like to learn right?    The gluten-free diet becomes the new normal after a while, and is no big deal eventually.  Well, it doesn't go away but you get used to it.

Welcome to the forum!

 

[Fundog]

I just want to add:  once you do start a gluten free diet, and reach that magical moment when you suddenly realize how much better you feel, and start noticing symptoms you weren't aware of until now -because they've gone away- you will develop an aversion to foods with gluten, having a negative association of those foods and feeling unwell.  Yes, there are moments when I see a food I like a lot, and realize I can't have it anymore, and then I have momentary regret.  But most of the time I am rejoicing in a relief of my symptoms, and delighting in better health.

[True Blue]

GFinDC and Fundog, thank you so much for taking the time to reply, very much appreciated and also very helpful. You have given me a much needed insight into how I should be feeling. I have started to try and be much more in tune with my body and have noticed I do have discomfort when I eat wheat.....previously I'd just put this down to eating too much but now I'm thinking it is a symptom I was just ignoring. It may just be my head playing games with me also!!! ?Thank you again for your help, I await my biopsy with interest ?

[Montegobay]

True Blue,

I understand your feeling on the matter on favorite foods.  My Celiac did not manifest itself until I was 38.  My gallbadder had to be removed because it was inflamed but not stones.  Like others have said to you earlier, you will actually develop a dislike for food with gluten in it.  So be patient with yourself and celebrate the foods that you will stop eating with a going away party.