SYMPTOMS NOT TALKED ABOUT ENOUGH: Breast enlargement/swelling

[Dannielizabeth]

So, I’m going through diagnosis and testing for coeliacs at the moment but I’m pretty certain I have it.

one of my symptoms that occurred anoit 4 months ago has been a change in my breasts of all things!

now I know that I have not gained weight, however my breasts grew about 2 cup sizes!! They became engorged, swollen, tender and heavy. I kept thinking it was my period due but then it carried on and no period ever came (my periods didn’t ever start until I went gluten-free). 

I went to the dr and they examined my breasts and definitely agreed they were very engorged and swollen but said it was most likely hormonal.

basically ever since it’s been a problem and makes me feel so uncomfortable and depressed and despise myself as it makes me look ten times bigger than I actually am because I’m so top heavy now. I am a low end healthy weight but my breasts literally went from a 32 B/C cup to a 34 D/DD!! For my size this is so disproportionate as well?

ive has several major ‘glutenenings’ over the last 6 weeks after I went gluten-free and they have become even more swollen and big. 

I also get regular periods now there about and every month my PMS symptoms are hell and my breasts go EVEN bigger so probably DD/E and it’s HORRIBLE.

has anyone experienced this and if so DOES IT GO BACK TO NORMAL PLEASE???

~Danni

[kareng]

That’s not usually associated with Celiac disease.  I don’t think I would except a vague  “ it’s hormonal” from the doctor.  I hope they sent you to a breast specialist & a mammogram at least.  

Edited October 27, 2019 by kareng

[cyclinglady]

Your doctor should have run a normal blood panel too.  Your hormones could really be out of wack.  Taking hormones might help if the blood tests reveal an imbalance.  Your Thyroid should be checked as well.  

Get checked.  This could be a sign of cancer:

https://www.medicalnewstoday.com/articles/322832.php

You should not go gluten free if you suspect celiac disease.  All celiac testing requires you to be on a full gluten diet.  Otherwise your test results will be negative. 

Edited October 27, 2019 by cyclinglady

[Dannielizabeth]

17 hours ago, kareng said:

That’s not usually associated with Celiac disease.  I don’t think I would except a vague  “ it’s hormonal” from the doctor.  I hope they sent you to a breast specialist & a mammogram at least.  

I’ve seen on other forums here that it can come with coeliacs disease! 

All my hormones have been checked and they were ALL normal!

no they didn’t ?

16 hours ago, cyclinglady said:

Your doctor should have run a normal blood panel too.  Your hormones could really be out of wack.  Taking hormones might help if the blood tests reveal an imbalance.  Your Thyroid should be checked as well.  

Get checked.  This could be a sign of cancer:

https://www.medicalnewstoday.com/articles/322832.php

You should not go gluten free if you suspect celiac disease.  All celiac testing requires you to be on a full gluten diet.  Otherwise your test results will be negative. 

They did yes and everything was completely normal!  

So I know that now, but i was actually wrongly told by my dr that I could give up gluten after the blood test. THEN they did the wrong test.

the normal iGa levels were raised but they didn’t test for the coeliac antibodies which they should have done if the others were raised.

I had to get retested but it may be negative now. I

my dr retested me on the basis that over 6 weeks Ive had SO many times where I’ve accidentally had a TON of gluten like a whole meal or a snack and I’ve had pretty severe reactions.. so we’re hoping that something may still show up but obviously yes it could come back negative?

[Dannielizabeth]

17 hours ago, kareng said:

That’s not usually associated with Celiac disease.  I don’t think I would except a vague  “ it’s hormonal” from the doctor.  I hope they sent you to a breast specialist & a mammogram at least.  

Oh also here are the forums I found talking about it, worth a read it’s interesting!

Maybe it is unrelated though!!

[cyclinglady]

I think you need to get copies of what blood tests were given and do more research.  For example, what IgA test was raised?  A TTG IgA, a DGP IGA or EMA IgA or just a plain Immunoglobulin A (IgA) test?  We are getting confused because we do not have the correct data.  

I assume you are not in the US, but perhaps the UK.  If so, the NHS usually orders the TTG IgA to screen for celiac disease.  If it is elevated, your doctor should have referred you to a Gastroenterologist for small intestinal biopsies via an endoscopy.  Standard procedure usually requires a positive antibodies test and biopsies.  Not sure why your doctor is not following standard procedures, if in fact your TTG test was raised.  

Celiac disease is systemic.  It can wreak havoc in many body systems beyond the gut because it is autoimmune.  Your increased breast size could be due to hormonal  imbalance, but you said that your hormones are okay.  If I were you, I would see a GYN for a breast screening.  Dumb question, but could you be pregnant?  

As far as the two posts you found on this forum about breast size, these are old posts and these people were never officially diagnosed with celiac disease per my knowledge. The lady who went gluten free has issues with breast swelling.    We have no idea if she has celiac disease or maybe she had cancer or another illness.  Again, if it were due to celiac disease, hormones may come into play.  

 

[Dannielizabeth]

On 10/28/2019 at 4:22 PM, cyclinglady said:

I think you need to get copies of what blood tests were given and do more research.  For example, what IgA test was raised?  A TTG IgA, a DGP IGA or EMA IgA or just a plain Immunoglobulin A (IgA) test?  We are getting confused because we do not have the correct data.  

I assume you are not in the US, but perhaps the UK.  If so, the NHS usually orders the TTG IgA to screen for celiac disease.  If it is elevated, your doctor should have referred you to a Gastroenterologist for small intestinal biopsies via an endoscopy.  Standard procedure usually requires a positive antibodies test and biopsies.  Not sure why your doctor is not following standard procedures, if in fact your TTG test was raised.  

Celiac disease is systemic.  It can wreak havoc in many body systems beyond the gut because it is autoimmune.  Your increased breast size could be due to hormonal  imbalance, but you said that your hormones are okay.  If I were you, I would see a GYN for a breast screening.  Dumb question, but could you be pregnant?  

As far as the two posts you found on this forum about breast size, these are old posts and these people were never officially diagnosed with celiac disease per my knowledge. The lady who went gluten free has issues with breast swelling.    We have no idea if she has celiac disease or maybe she had cancer or another illness.  Again, if it were due to celiac disease, hormones may come into play.  

 

Apologies for such a late reply!!

but thank you so much for this.

ok so here is a photo of my results that I got

back...they had NOT tested for TTG IgA the first time despite it being ordered!!

they only did the IgA but had told me to give up gluten.

i went back 2 months later after FINALLY getting the results and They did the test again but at this point we were relying purely on gluten exposure once a week maybe to be enough...well either it wasn’t .ORG i don’t produce coeliac antibodies anyway which apparently not everyone does?

My TTG was non existent!! But my IgA was raised AGAIN!!

Breasts still vvv swollen and I’ve had YET MORE accidental gluten in the last 2 weeks and am feeling dreadful atm.

last week I opened a bag of sweet potato fries, touched them and went to put them on the tray...looked and realised it has wheat flour in so I stopped straight away and didn’t have them..however went to prepare different food for myself but didn’t even THINK to wash my hands...a few hours later I was in complete agony, stomach extremely distended (pic below) and absolutely exhausted.