how many people have got tests for celiac disease ?

General Discussion
#1

Guys please go for celiac disease tests. I can not say it is the cause or the effect of PFS but for many of us, celiac disease is now a fact. Oat meal twice caused me to call 911, second time in critical condition. Just Google and you will find many ex Accutane users are now celiac patients. celiac disease and low tetosterone go together.

SYMPTOMS

diarrhea or constipation, weight loss or gain, abdominal pain and bloating, malnutrition, muscle weakness, anemia, depression, edema in the lower limbs from poor protein assimilation, and poor concentration. In children, there is also the inability to grow/thrive, poor tooth and bone development accompanied by tooth decay, and a distended and very sensitive belly.

Note:

if in the past you came negative for celiac that does not mean you are free. I just read few cases where celiac was postive on 2nd or 3rd tests. Symptoms come first but clinical diagnosis takes time.

#2

I have taken two of these test…& both came back negative…I also took tests for chrons disease. and those were negative as well.

#3

I have been through all of this and am negative.

#4

you wrote somewhere here that your sister is Gluten intolerant already. Have you got tested?

#5

This is an unrelated condition and has nothing to do with persistent Finasteride side effects. Trying to connect the two is pointless, a waste of time and makes you and the rest of us looks like hypochondriacs, impacting the credibility of this site.

#6

Mew maybe you are right but tell me how is it possible. I have been eating wheat,Oat all of my life but now all of sudden I have got severe reaction to Oat. Oat meal will send me again to ER. why I got Eczema and fungus now, never before. I was so healthy that never got any flue shots in my life and never got flue, I used anti biotics last time in 1997 or maybe even before that. why is this happening now. Is it low androgen level is causing this all?

#7

spstriken, we cannot blame every single thing that happens to us post-drug on Finasteride.

It’s not realistic, it make us sound like hypochondriacs, ruins this site’s/members’ credibility, and does not help our cause when trying to generate awareness with media, doctors or researchers.

In your case, reviewing your post history there are many things you have mentioned health wise which you blame on saw palmetto, and you seem to post often about “get tested for this or that” or various theories… when instead we should be focusing efforts to channel donations to the PFS Foundation, which is able to fund actual research, so you won’t have to waste time googling things online all day and guessing at the cause of your issues.

Anyway, celiac disease is a common diagnosis for many people worldwide, one which has nothing to do with taking Finasteride. Your other posts today stating a member “has celiac disease”, as if you are a doctor and can diagnose someone over the Internet anonymously via text, has also been flagged.

#8

Mew I am in contact with many ex-accutane users, many of them having auto immune hepatitis, IBS, impaired pancreas, and Celiac disease. It is not coincidence that 5Alpha reductase inhibitors have destroyed our immune system. There was a time when no body was ready to believe that saw palmetto is as poisonous as Fin or Dutasteride. Indeed some members here suggested you to ban saw palmetto stories here and you did that too. If you think I am causing more damage than good, then please go ahead and delete this thread.

#9

@spstrkn

it seems possible that something like celiac disease may be a long term consequence of having a “crash” or whatever, but it doesnt make sense that it is a root cause or anything like that (in my opinion)

the best thing we can do is try to raise awareness and create funds for the pfs foundation, but not continue to try to go overboard on medical stuff that is not a root cause and wouldnt fix our situation anyways

i dont mean this in a snarky way, i am just giving my honest opinion, i think mew is right

#10

got scientific proof for what you are saying is true?

#11

I’m negative for celiac disease.

#12

what kind of test did you take? Blood antibodies or biopsy?
I have read some cases where first or second tests were negative but the 3rd was positive. The important thing is symptoms. If you feel fatigue, headache, brain fog, bloating, upset stomach etc after eating Gluten diet like Rye, wheat etc then you should go Gluten free for 2-3 weeks to see if you feel better. Today is my 4th day without Gluten ( I am doing my best to be Gluten free but it is very hard to be 100% Gluten free)and my balloon like belly and brain fog has decreased a lot.

#13

I have seen a naturopathic doc in NY for the past 4 years who is helping me with the sides. In 2009, BEFORE I had bad fin sides, he did a celiac panel on me. I came back as gluten-sensitive but not celiac. Re-tested after my crash in 2012. Same result, positive for sensitivity but not celiac. I never had any major digestive or brain symptoms while eating gluten (and I ate A LOT OF GLUTEN) my entire life. Sometimes after downing a pizza I’d feel tired, but happy. However, almost immediately after the crash, I had a whole suite of PFS symptoms, and I went gluten and dairy free (at the naturopath’s advice). Hard to tell if it helped with general symptoms, but I will say that after about 3-5 days I no longer needed my asthma meds! I had chronic asthma my whole life and it totally disappeared on this diet. Also I did lose some belly and moob fat on the diet, but that could just be from replacing breads with healthy snacks, and eating more vegetables. I would recommend a GFDF diet as a great starting place for rallying against PFS. But I do not believe that Celiac is necessarily caused by fin, or that celiacs are more prone to PFS. Not enough data to make that judgement just yet.

PS a particular member PM’d me telling me I had celiac but the test that is positive has very low specificity and is not good for determining if someone has celiac disease.

#14

I cut the gluten. I feel much better without. It may be an allergic reaction. not discount the possibility of immune system problems.

#15

still going gluten free and my pot belly has completely gone. I am very happy. My chest fat or swelling or water retention (I am not sure what it is) has decreased a lot, only 10% remaining. Guys we are not like before we should admit it. While gluten fee diet is not the cure but it makes life a little bit easier for sure. I don’t know what else we are allergic to now after pfs.
How Gluten and Testosterone is related to each other I give some qoutes from different forum. you will see going gluten and dairy free helps people

celiac.com/gluten-free/topic … tosterone/

My husband was diagnosed with low testosterone a few years ago. It was so low that his doctor was surprised that we have two kids without needing fertility treatments
A couple years ago we put the whole house gluten-free when we figured out our kids needed to be on the gluten-free diet. So from that point on he has only eaten gluten if he went out to lunch. The surprising thing was that when he stopped his patches he didn’t get his low testosterone symptoms at all. His libido never changed. He wasn’t falling asleep all the time. He wasn’t irritable or angry. He was fine. If I hadn’t known better, I would have assumed he was still taking the Androderm.

celiac.com/gluten-free/topic … nd-gluten/
A couple years ago, I was diagnosed with low testosterone My libido has been pretty non-existent at times, which was quite a
dramatic change from the most of the first 40 years of my life.

Now suddenly after a couple days without gluten, I feel like a jack-rabbit on a date. I’m plenty
frisky, but also wondering what gives?? Not that I’m complaining or anything…
Same thing happened a week and a half ago when I abstained from wheat for a while.

#16

It is an allergic reaction. Propecia has caused our immune systems to go whacky because Propecia interferes with cortisol metabolism. Cortisol inhibits immune system. You had an allergic reaction. It does not mean you are celiac. But you are right in staying away from gluten. I felt awful when eating gluten for some time, then it got better. It is all related to cortisol.

#17

It has been almost four years and I feel awful after eating bread.

#18

Interestingly, my sensitivity to gluten sky rocketed after my crash and I was subsequently diagnosed with celiacs disease.

Celiacs is genetic, you are born with the disease, however it can be activated later in life following an external stressor - in our cases likely the onset of PFS “activated” the dormant celiac disease.

Unfortunately my PFS symptoms persist even after 6 months of going strictly gluten free.

#19

I have started 100% whole wheat two years ago again. I do not feel fatigued or nauseous anymore after eating wheat. Only feel pain or nausea after eating pure white bread. I make my own bread from 100% whole wheat flour. I noticed after starting whole wheat my health has improved .