Gluten intolerance/Celiac

[Ejm526]

I have read through so many threads on this site, so I apologize if I’m repeating things that have been posted.

I am turning here, as I do not have many people to discuss this with. Most don’t understand. 

I am a 27 year old female, and I can not remember the last time I felt “good”. I finally decided to go to the doctor when I realized how I’ve been feeling isn’t how everyone feels. After seeing my family doctor, no blood work, he referred me to a Gastroenterologist. Now I’m second guessing myself, and am worried they’ll say everything is normal.

(Back story) For as long as I can remember, I’ve had brain fog, anxiety, depression, mood swings, acid reflux, and I’m short, (4’10) I decided about a year ago to go gluten free, I did it for 8 months. Everything cleared up. But while on vacation, I slipped up, and went back to gluten. Since then I get fibromyalgia pain, and painful acne?* Fluid filled bumps all over my face. (One week without gluten it’s gone!) 

I don’t have bad digestive issues, sometimes, but not always.

Im not sure what I’m asking, but with many doubting me, or making me feel crazy.. does anyone think I I have a valid reason to keep my appointment with the gastroenterologist since I dont always have digestive issues? I don’t want to end up looking stupid 

[kareng]

2 minutes ago, Ejm526 said:

I have read through so many threads on this site, so I apologize if I’m repeating things that have been posted.

I am turning here, as I do not have many people to discuss this with. Most don’t understand. 

I am a 27 year old female, and I can not remember the last time I felt “good”. I finally decided to go to the doctor when I realized how I’ve been feeling isn’t how everyone feels. After seeing my family doctor, no blood work, he referred me to a Gastroenterologist. Now I’m second guessing myself, and am worried they’ll say everything is normal.

(Back story) For as long as I can remember, I’ve had brain fog, anxiety, depression, mood swings, acid reflux, and I’m short, (4’10) I decided about a year ago to go gluten free, I did it for 8 months. Everything cleared up. But while on vacation, I slipped up, and went back to gluten. Since then I get fibromyalgia pain, and painful acne?* Fluid filled bumps all over my face. (One week without gluten it’s gone!) 

I don’t have bad digestive issues, sometimes, but not always.

Im not sure what I’m asking, but with many doubting me, or making me feel crazy.. does anyone think I I have a valid reason to keep my appointment with the gastroenterologist since I dont always have digestive issues? I don’t want to end up looking stupid 

If you have been reading along, you know that being gluten free is not good for testing.  YOu must be eating a regular gluten containing diet for about 12 weeks before the blood test.

[Ejm526]

Yes! I have not been gluten free since February!

[kareng]

Just now, Ejm526 said:

Yes! I have not been gluten free since February!

Great.  I don't see why your regular doc couldn't have given you the Celiac blood tests.. Would speed things up a bit.  You might see if he will.

[Ejm526]

1 minute ago, kareng said:

Great.  I don't see why your regular doc couldn't have given you the Celiac blood tests.. Would speed things up a bit.  You might see if he will.

I asked as well, and they said no, you’re referred now. You can ask them to do that testing. 

[Ejm526]

I guess what I’m looking for, is support, and others who have gone though this, to let me know if it at least sounds like Celiac. I want to go in the right direction. Without lots of wasted time/money. I appreciate all responses!

[tessa25]

The good thing about going to a gastroenterologist is that they test for many different issues. Be sure to ask for the full celiac panel, not just the screening test.

TTG IGA  and IGG

DGP IGA  and IGG

EMA

IGA

 

Sounds to me like you know what's wrong and just need confirmation. When all testing is done there is nothing preventing you from going gluten free.

[Jmg]

1 hour ago, Ejm526 said:

Im not sure what I’m asking, but with many doubting me, or making me feel crazy.. does anyone think I I have a valid reason to keep my appointment with the gastroenterologist since I dont always have digestive issues? I don’t want to end up looking stupid

Hello and welcome!

Absolutely you are doing the right thing  You are looking for answers and that's a good move. I dearly wish I'd done what you are doing at your age. You need to be confident and assertive. Stand up for yourself and for your right to seek the best health possible.

You have response to the gluten free diet which is a key indicator, you now need your doctors to look for blood markers. Your back on gluten so that should help you get an accurate test. 

One way to build confidence is to prepare. Make some notes detailing the symptoms you've experienced, when you've noticed them and also what happened to them during your 8 months gluten free.  Nothing longwinded, just some bullet points so that you don't forget anything when your with the gastro. Don't assume they have all the info from reading your notes, they may have skimmed them (if your lucky).   After the bullet points just write 1 sentence on what you'd like from the meeting, ie 'I'd like to eliminate celiac as a diagnosis'. 

There's some links gathered here which may help. Note that the test info there is out of date, the top two tests listed are no longer in regular use.

One final point, if after testing is complete you're negative for celiac, don't let that stop you using the diet if it works for you. The main thing is to feel well and I tested negative but going gluten-free cleared up all my problems. 

Best of luck

[Ejm526]

Thank you! It takes a lot to put myself first, but seeing that my son seems to have quite a few symptoms, I know I need to get us healthy. I appreciate your advice!!

[GFinDC]

Hi,

the bumps on your face could be a symptom of dermatitis herpetiformis.  DH is a rash that only people with celiac disease get/  People with DH sometimes don't pass show up on the usual blood antibody testing.  But there is a skin biopsy test they can do instead.  They take a small skin sample from next to a lesion and check it for IgA antibodies to gliaden.  A dermatologist can do this test.

[Awol cast iron stomach]

I get all kinds of symptoms that over the decades like to rotate and pop up, elude, go evasive, team me etc.

My skin manifestations were missed numerous times. I can a full on out almost every where after I delivered my daughter to regular cyst like bumps on bum, face , along with my red mask nose and cheeks, very painful insanely itchy fluid filled bumps on the back of my elbows. 

I am glad they are sending you to gi with this disease you can spend decades misdiagnosed despite making the rounds.  I have had gi issues my whole life and was labeled IBS just based on symptoms. Many of us on forum were diagnosed IBS on symotomology alone. We spend more years suffering with that albatross label.

The skin stuff  again often Dr would observe it take no samples of my bumps but give me a cream for my issue observed issue.

They are sending you to GI that is good cut out the be labored trip through medical ville. Cut out the middle go directly to gi. The see something and that's why they sent you directly. 

I know you have doubts. To be blunt some of us do- you know why another causality of this illness years of being dismissed and minimized since we have a silent (although it is not always they just lacked the knowledge and testing across the medical spectrum/ disciplines)  disease. We often learn to doubt ourselves and develop a high threshold for pain since you have known no other way.

My son has my issues which we learned after we had to remove gluten entirely from my home because of my extreme and highly sensitive symptoms. I initially tried to do a shared household and someone who went 4 decades misdiagnosed in my experience is not a good shared household candidate.

They are advancing you to GI which they were not do if they did not see evidence to do so. The doubt you experience is one of the bags we can get saddled with in life from the misfortune of celiac being under diagnosed and reportedly too long.

Good luck

 do this for you and most certainly for your son.

we are here for you on this journey