am i crazy because im a girl??

[Gina777]

hello!

i am a self-diagnosed celiac at the moment. i have been waiting over a year for help from doctors, have been urged to go on depression/anxiety medications because i must be "mad and angry at the world. you have tricked yourself into food intolerances" even though my symptoms are outstanding. i feel like i am the one doing the doctors' jobs and as a 21-year-old woman, being told that i am just a crazy girl is NOT an answer i am willing to accept.

almost two years ago, i was found out i had mono and strep...devastating! i was tired, weak, i lost about 20 pounds. after my recovery, I kept getting sick (6 sinus infections and a newfound lactose intolerance). in april of 2019 i started to have a dry, itcy, bleeding rash that kind of looked like pimples along my cheeks/nose/chin. i went to a doctor at university...IBS and fibromyalgia she said. low fodmap it was...lost more weight. i had been eating gluten and did a few full blood panels (she thought i had lupus and luckily no autoimmune was flagged). so i continued to eat gluten, continued to bloat till i looked like i was 6 months pregnant, nausea, etc. i quit gluten & dairy last june (a whole year and i am so damn proud of myself for that) and what do you know...no more facial rash, less headache, less ringing in my ears, back pain lessens etc.

now this year, i have been advised by my nutritionist to stay away from high fodmap fruits, raw veggies, gluten, dairy...eat as much fatty oils, fruits, meats that i can to help me have regular bowel movements. my gastro has done tests for sucrose and more blood panels (never advised to go back on gluten though) and nothing is coming back irregular. the malabsorption is REAL...my (sorry for the gross) poop is fluffy, black, filled with mucous. i have to work out daily just to keep my energy levels up and my GP has said to just assume i have SOMETHING, and just do what "feels right."

so after this lonnnnnng explanation/justification (because everyone tells me to "just try some bread to see if you react. you don't have a diagnosis") am i truly crazy to ask for a biopsy? i don't WANT to have celiac, but i don't want to have to justify myself OR the other intolerances that can piggyback off celiac...my body tells me when something is wrong and i shouldn't be blamed for listening. I am 21, as i mentioned, and this just isn't right.

if anyone (especially a lady) can please just tell me that they had to wait but got an answer or that they had to know their own bodies to prove to a doctor that they needed an answer, i don't have anyone close to me that has celiac.

thanks for reading, <3 gina

[GFinDC]

Hi not crazy person! 

No, having symptoms that a doctor can't explain does not make you crazy.  It does show what many of us learned by hard experience, that many doctors are not well versed in celiac symptoms and diagnosis.

But, here's the rub. you can't be accurately tested for celiac disease if you haven't been eating gluten for 12 weeks before the blood tests or 2 weeks before the endoscopy.  The blood tests check levels of gliaden antibodies in the blood stream.  The endoscopy is where they take 4 to 6 biopsy samples of the small intestine lining for microscopic review.  Celiac damages the villi lining of the small intestine and that is what they look for.

You could have another AI (auto-immune) condition instead, like Crohn's or ulcerative colitis.  But the positive response to the gluten-free diet is an indication of possible celiac disease.

 

[cyclinglady]

Hi!

I think you need to get another GI’s opinion.  
 

I kept thinking that my little niece had celiac disease.  She went to 4 Gastroenterologists.  Celiac disease was firmly ruled out via blood tests and biopsies while still on a gluten diet.  The 4th finally ordered a pill camera where they caught  severe damage from Crohn’s which was out of reach of both scopes.  
 

You are not crazy.  Something is wrong.  You can decide to go back on gluten to get tested.  But are you still at school?  If you have the summer off, you could do a gluten challenge.  Otherwise, you might want to continue the gluten-free diet (if it is working) until you graduate or have more time to prep for a challenge for next summer.  
 

A very dark stooll sounds like old blood (or too many Oreo cookies).  Again, push for a second opinion.  
 

My niece might someday develop celiac disease.   But for now she is doing well on her treatment.  

Edited June 22, 2020 by cyclinglady

[Gina777]

On 6/21/2020 at 9:07 PM, GFinDC said:

Hi not crazy person! 

No, having symptoms that a doctor can't explain does not make you crazy.  It does show what many of us learned by hard experience, that many doctors are not well versed in celiac symptoms and diagnosis.

But, here's the rub. you can't be accurately tested for celiac disease if you haven't been eating gluten for 12 weeks before the blood tests or 2 weeks before the endoscopy.  The blood tests check levels of gliaden antibodies in the blood stream.  The endoscopy is where they take 4 to 6 biopsy samples of the small intestine lining for microscopic review.  Celiac damages the villi lining of the small intestine and that is what they look for.

You could have another AI (auto-immune) condition instead, like Crohn's or ulcerative colitis.  But the positive response to the gluten-free diet is an indication of possible celiac disease.

 

Thank you for your response, it feels good to be heard. Did you ever have to go back "on" gluten to do a blood test and/or an endoscopy? I fear eating it again, as I had hair loss up until I quit it for good. 

[Gina777]

On 6/22/2020 at 12:06 AM, cyclinglady said:

Hi!

I think you need to get another GI’s opinion.  
 

I kept thinking that my little niece had celiac disease.  She went to 4 Gastroenterologists.  Celiac disease was firmly ruled out via blood tests and biopsies while still on a gluten diet.  The 4th finally ordered a pill camera where they caught  severe damage from Crohn’s which was out of reach of both scopes.  
 

You are not crazy.  Something is wrong.  You can decide to go back on gluten to get tested.  But are you still at school?  If you have the summer off, you could do a gluten challenge.  Otherwise, you might want to continue the gluten-free diet (if it is working) until you graduate or have more time to prep for a challenge for next summer.  
 

A very dark stooll sounds like old blood (or too many Oreo cookies).  Again, push for a second opinion.  
 

My niece might someday develop celiac disease.   But for now she is doing well on her treatment.  

Thank you for your response as well. I do have time off and can go in for testing as cities open back up! A second opinion does sound like a good idea, but only for a GI...the more GP's I see (as i said i have one at home and one at school) the crazier I am made out to be. Also, you and the other commenter have mentioned Chron's/other autoimmunes...I haven't thought of anything beyond Lyme, Lupus & celiac, as they were original concerns.

[GFinDC]

2 hours ago, Gina777 said:

Thank you for your response, it feels good to be heard. Did you ever have to go back "on" gluten to do a blood test and/or an endoscopy? I fear eating it again, as I had hair loss up until I quit it for good. 

Hi Gina,

No I didn't do the gluten challenge.  It was months to get my appointment with the GI and I didn't want to wait on starting the gluten-free diet and getting better.  By the time I did see a GI and get tested my antibodies were not  high enough to register positive.

Hair loss can be caused by many things including malabsorption.  I don't really think going back on gluten for the testing makes sense for all people.  It's better to get tested before going gluten-free IMHO.  Sometimes the symptoms and damage to the body are not worthwhile.  For some people it's important to have a formal diagnosis.  But if you don't need that to stay on the gluten-free diet and take it seriously, then there isn't a great need to be formally diagnosed IMHO. 

Edited June 25, 2020 by GFinDC

[cyclinglady]

Do not accept that this is all in your head!  

Your university doctor might have thought your itchy, pimply facial rash may have been lupus, but was rosacea ruled out?  It is common with celiac disease and autoimmune thyroiditis (that too can cause hair loss).  Just measuring TSH is is not acceptable.  A full thyroid panel, including thyroid antibodies) should be done.  Again, all autoimmune is systemic.  My own mother who was diagnosed with fibromyalgia (she already had Graves (hyperthyroid autoimmune) and now has RA.  I have Hashimoto’s Thyroiditis (the opposite of my mother), celiac disease and Autoimmune Gastritis.  Some days, when my gastritis is flaring, I feel like I have fibromyalgia or RA brewing.   It is all linked, in my non-medical opinion.  
 

In any case, my going gluten free to treat my celiac disease not only healed my small intestine, but caused my thyroid enlargement to diminish along with thyroid nodules (unfortunately, too late to completely heal my thyroid, so I must take thyroid medication for life).  
 

It is worrisome that you have been dairy and gluten free for a year with some benefit, but have not healed.  How well did you manage to be gluten free while at school?  I know that this can be hard if you live in a dorm or apartment (or maybe you are back home like my freshman).  
 

My hubby went gluten free per the poor advice of his GP and my allergist.  That was 20 years ago!  He refuses to get tested because...we like to pay our bills.  We know that gluten makes him sick.  Who else would remain gluten free if they did not believe it would work?  He also had chronic sinus infections and he felt like he had the flu.  All that resolved never to return again!  Amazing,  
 

You have to determine what works best for you.