Possible Celiac Symptoms...

[Nexangelus]

Hello everyone, I'm new to the forums. I've seen quite a few informative posts via google originating from this site and thought I'd register and poke around a bit. To start, I thought I'd ask the opinion of some of the more knowledgeable celiacs/gluten intolerant members before heading over to the doctor's office uninsured and paying a bundle for testing when my symptoms don't seem viable for celiacs in the first place.

I'm 18 years old (male), I weigh 130 and am 6'0 tall. I tend to eat healthy and in moderate portions as well as some form of physical fitness fairly regularly (could do a bit more...). I've always been a bit underweight, although I have perfectly regular eating patterns. Going back a ways, I've always had slight energy problems, but they were manageable and did not inhibit day to day living. I've also had occasional bouts of diarrhea and consistently have loose stools as far back as I can remember.

The past few months, I've been having a dreadful time. I have a crippling amount of fatigue present at all time, regardless of how much I sleep (have tried sleeping anywhere from 6-12 hours with similar results). My mind feels like it's in a sort of "fog" and I'm having trouble forming coherent thoughts, keeping up in conversations and retaining any sort of information. I have unbelievable muscle weakness and fatigue under minor stimuli such as walking up the stairs. Alongside the muscle weakness is shortness of breath, which leads me to feel dizzy every so often. Oddly enough, my vision is a bit off as well. I feel as if I'm having trouble focusing my eyes and they often become sore and achy (multiple eye exams have all come back impeccable) And finally, I alternate between days of diarrhea and days of constipation.

I've gotten constant remarks about how out of it I seem and am having a terrible time functioning between the extreme fatigue, weakness and vision problems. I'm only 18 and I feel as if I'm 70. I'm aware that most of these aren't typical celiac symptoms, but a few match up. Celiac runs in my family - My grandmother, mother, aunt, uncle and sister all suffer from celiac, although my symptoms seem more extreme than anything they've described.

Does anyone have any idea if this could be a possible case of celiac, or why these symptoms could come on so fast. I can't recall a change in the amount of gluten consumed, but don't have a whole lot else to work with. I've been gluten free for about 5 days now... No changes yet, but hoping to see some. What's the general time frame for the stomach healing up?

Thank you in advance for any advice. It's greatly appreciated.

Jeremy

[mushroom]

Hi Jeremy, and welcome to the board.

Well, you certainly sound like a classic celiac to me. If you have been doing any reading around here you will find those symptoms over and over. Fatigue, muscle weakness, brain fog, vision problems,

inability to gain/losing weight, alternating diarrhea and constipation, and family history of celiac. What will generally trigger an abrupt swing to celiac symptoms is some kind of stress on the body, emotional or physical, an illness, injury, infection, for women even childbirth can be the trigger. It sounds like you have been building up to this for some time though.

Now, if you are planning on heading to the doctor to have testing to verify this, I'm sorry to tell you that you must resume eating gluten immediately, as going gluten free will interfere with any testing. The blood tests are designed to detect gluten antibodies, and as soon as the stimulus is withdrawn the antibodies start disappearing. Five days probably isn't long enough, but if you want testing done you should go back on it immediately. Same goes for the endoscopy with biopsy which is done to confirm the diagnosis - healing starts taking place right away, and although the whole healing process takes some time you hay precipitate sufficient healing to interfere with the biopsy also. Once you have had all testing done, you can go gluten free immediately without waiting for the results. And you do not have to have the biopsy although doctors always want to do it; if your bloodwork is strongly positive, and you are uninsured, you can go gluten free immediately.

I would think that with yyur strong family history (and this is a genetically based disease) your doctor should accede to your request to be tested. Of course, you do not have to be tested, that is entirely your choice, but I think you should give it a go. If you are planning on going to college/living in a dorm/being part of a meal plan situation you will need proof of needing to eat gluten free, and now is the time to be tested. If you decided later that you wanted to be tested because you were not convinced of the diagnosis, you would have to go back on gluten for 2-3 months in order to do sufficient damage for the testing to be valid. And from the experiences I have read of those who have done so, it is not fun became your symptoms are normally much worse the second time around.

The amount of time to heal varies from person to person. You should expect to notice improvement within three weeks; some of the brain fog/vision problems sometimes take a longer time to improve, the weight will come back slowly because your stomach needs to be able to absorb nutrients before you can get full benefit from your diet.

Good luck with your testing decisions and the healing process. Stick around and ask whatever other questions you have and let us know how you get on.

[Financialman]

You do seem to have a lot of the symptoms of Celiac disease. The problem with a lot of autoimmune diseases, which is what Celiac disease is, is when you get one you usually wind up getting another and possibly a third. Everyone is different. It is good you are going and getting tested but keep in mind that right now the only way you can know for sure if you have Celiac disease is by haveing them put a scope down your throat, they can put you to sleep and you won't feel or remember anything,and looking at the inside of your small intestine. That is the "only" for sure way to know if you have Celiac disease. Blood tests just won't do it. If your doctor doesn't understand that then maybe you need to see another doctor.

Since you are young and if you have Celiac disease your small intestine may heal quickly. I don't think anyone can know what time frame for sure. Get the tests. See what they come up with. If you have Celiac disease it is not the end of the world. There are a lot of knowledgeable people on this forum that will help you get through this. Good luck and keep us posted.

[Marlie]

You are definitely a candidate. I can tell you getting diagnosed is an expensive proposition even with insurance. The blood work I believe was in the hundreds and the biopsy my guess would be $1000-$2000. The GI fee approved by our insurance just to do a biopsy without the hospital bill or anestheia was $950. If you can't afford any of this go gluten free and get your vitamin levels checked especially iron, B12, Vitamin D. In terms of prioritizing I would do it in this order blood work, then a biopsy and lastly genetic testing. Find a doctor you can negotiate rates with regardless of what you do. Also, a Celiac Panel requires you to be consuming Gluten.