New Here, Awaiting Labs, Question On Symptoms

[Corihere2]

Hi All,

I had my blood drawn today to test for the antibodies associated with celiac disease, and am also scheduled for a colonoscopy next week.

My symptoms have been unexplained weight loss, hair loss, irritability, pain on my right abdomen and under my ribs, weakness, paleness, looking awful (I could go on and on)... and anyway, all my blood work for thyroid, hormones and all the basics come back great. I consulted with a GI and after hearing of all my symptoms and problems in the alst 7 months, he wants to explore Celiac as a possibility.

So I've just started reading about it and wonder how many people have had the kind of symptoms I have. I am 46 years old, and in the last half year or so (after a surgery I might add), I started noticing big changes in the texture of my hair, I started loosing more of it, and weight as well! I've lost 11 pounds in 6 months and I don't need to at all! I eat every couple of hours, but not much at a time...and just in general don't feel so great.

Can anyone tell me of the symptoms that they had prior to diagnosis? Has anyone had changes in their hair like I have? Do things return to normal once you start gluten free? Also, what can I expect at the colonoscopy?

I'd appreciate any help or feedback very much!

Thank you,

Cori

[Carriefaith]

I've experienced all of the same symptoms that you described and others, especially gastro-intestinal symptoms (diarrhea, gas, bloating) before I went gluten free. After going gluten free I noticed... (I'll give a list):

-decrease in hair loss (my hair loss is normal now - before going gluten-free I used to lose more hair than usual)

-less bone/joint pain

-less irritability

-increase in weight about 5-6 pounds. (At one point before my diagnosis I lost 10 pounds in one week! I'm still borderline underweight though)

-I also look healthier (according to friends and family)

I am however still struggling with GI problems, energy levels, and fatigue. I actually just had a colonoscopy about two weeks ago to see if anything else is going on in addition to celiac. I didn't mind the prep for the colonoscopy. Fasting for 63 hours was tough though. Most people do fine with the colonoscopy and don't feel a thing since they give you pain killers and a sedative. I'm not going to lie.... It was painful for me but I think that it is rare to feel pain. I survived though - that's all that matters If you're worried just ask for more pain killers or more sedative.

I hope that you're colonoscopy goes well and that the doctors will find out what is causing you're symptoms

-Carrie

[pixiegirl]

Ummm I'm confused here... do you mean colonosocopy or endoscopy? For celiac they usually do the endo... one.

I'm just curious because I'm getting a colonosocopy in January as I'm of the right age for it as a preventative test and I sure don't have to fast for 60 some odd hours, the day before I can actually have an egg for breakfast and then I have to drink the yucky stuff that cleans you out. the next morning I have the test and also on that day before I can have tea and some juice.

I hope its not painful, my mom had one last year, I took her down for it and she said the clean out day was way worse then the test I know that to be true because when I picked her up after the test she said, "Lets go out for lunch" and we did!

Susan

[dbuhl79]

Endoscopy: A diagnostic procedure to view the inside of an organ; in gastric endoscopy a tube with a light source and miniature video camera at its tip is inserted down the throat into the stomach to view the stomach wall.

Colonoscopy: A procedure that allows inspection and tissue sampling of the rectum and large intestine by inserting a flexible tube with an attached camera through the rectum.

From what I understand the "prep" procedures for these are going to vary depending on where you have them done. My parents for insistance had conoloscopy (via regular chk up for polyps for those 50yrs+). There prep procedures was the "clean-out" method prior to the exam. This is what I understand known to be the worst part of the procedure. Most clinics will sedate you slightly. As my father put it, you're in "la-la land" so much they could do anything to you. He watched the entire procedure on camera, and I think was amused by it being sedated as he was. After the procedure he was fine.

My mother had a reaction to the sedation, causing stomach upset for nearly a week afterwards. Because she is extremely sensitive and has a history with any sedating medications that cause this.

Most people I have heard say the pain or discomfort you feel form the colonoscopy (or sigimoidoscopy which is only HALF of the intestines viewed), will be from the air the push through the intestine. This can cause cause, abdominal pain etc.

From what I understand, a lot of people come to after sedation and do not recall any of the procedure, only being taken into the room.

It varys for each individual, each clinic, each doctor. So its tough to say. I've heard some places don't sedate you for either procedure. I'm not sure.

Good luck, and don't worry its not as bad as the name or descriptions sound!!

[bklyn]

Recently, I had an endoscopy, colonoscopy and a small bowel series (my gastro calls this a "work Up" and my experience was this - the endoscopy requires no prep, other than nothing to eat or drink after midnight. The colonoscopy was difficult because of the time fasting, I had a terrible headache from not eating (my test was late in the day). For both of these tests, I was sedated and don't remember a thing. I slept for a few hours at home after tests. Good luck

[Corihere2]

Thanks to all for your responses. Yes, I am scheduled for the colonoscopy, not so much related to Celiac, but because I also have a pain in my right upper abdomen (tender along the right side under my ribs) AND they probably also want to go in and rule out anything else that may be causing my symptoms (in case it isn't Celiac).

I don't officially know yet if it's Celiac, as will get those results tomorrow or the next day.

Hummm, I'll keep you all posted.

Cori

[charlotte-cat]

Hi,

I, too have just been through the blood work and stool analysis (what a joy!) Mine came back positive, and I am scheduled for an endosopy on the 28th. I am nervous about the endoscopy because we have a black tie wedding to go to on New Years Eve, but I am more concerned with getting better. I had knee surgery in Aug, and things have deteriorated rapidly since then. I was always too thin, no matter how much I ate, but now it's down right scary! At 5'10" I am tipping the scales at 112lbs. I am sick and tired, and sick and tired of being sick and tired!!!! I have been advised to not go gluten free until after the endosocpy.... I am having such a hard time because gluten products make me so ill....vomiting pain exhaustion. I have 3 boys....ages 3,5 and 7, so this is awful. I just want to feel better and gain 20 lbs. Does anyone have any advice?

[stef-the-kicking-cuty]

Hi Cori,

i've had most of your symptoms, too. Except of the pain on the right abdomen and under the ribs. I had little problems all my life - a little bit here, a little bit there. But the real severe symptoms also started after a surgery with me. This is also one already known trigger of celiac. So if they diagnose you with celiac, there would be your trigger. But well, i wish you that you feel better.

Stef

[tom]

Charlotte - Feel a TON better w/in 3 days by starting gluten-free NOW !

There is no good reason to continue poisoning yourself prior to an endoscopy.

It's just the bloodtest that produces no celiac-diagnostic info when a celiac is off gluten.

[strack2004]

Corihere I have not been diagnosed with celiac disease, but have had digestive problems most of my 76+ years. Just decided to go on it. My Doctor gave me his blessing and continues to be encouraging. I have been celiac disease on the SCD version of the diet for 4 months now. Improvements have been increased energy and better sleep patterns. My digestive problems are still there. I also have pain under my right center rib cage. I can poke (gently) the exact spot. Have recently had an ultrasound which came back normal. I guess the next step is an MRI.

I have had 3 colonoscopies. During the first one a small polyp of a kind that can turn cancerous was removed. The other two were clear so I don't have to have another one for 10 years, which surprises me. I was one of those who go to sleep from the anesthetic. I felt nothing and had no memory of the procedures.

I do notice that my ribcage pain gets worse when I eat acidic foods. Have been drinking lemon in my tea since I have had a cold. My pain has been worse. I have lost weight on the Selected Carbohydrates Diet, but I had it to lose. Now I could probably get into my wedding dress, except that my shape is a bit different from having had 6 children and not really getting into shape between or since then. My abdominal muscles definitely need toning! Cheers, Ruth STR.

[Mosaics]

Hi everyone. I'm new here. I was diagnosed with celiac disease in the summer of 2003, so have been gluten-free for about 18 months. I never noticed anything that I thought out of the ordinary about my health until I found out I had celiac disease

To answer the OP, the main change that I've noticed is that my acid reflux went away immediately when I went gluten-free. Both my children, ages 21 and 15, tested positive also. They have suffered with leg pains most of their lives. Dr.'s always said, "growing pains". Bah. Now we know. My 21 yr. old went through a period of being very tired all the time. We found out that she was severely B12 and calcium deficient. 15 yr. old is lactose intolerant and was always kind of small for his age. He had a tremendous growth spurt shortly after going gluten-free. I don't know if gluten-free had anything to do with it or not.

[bklyn]

That's an interesting comment about acid reflux and how it disappeared after going gluten-free. I noticed that I no longer have an annoying cough (which I have read can be from a hiatal hernia) which my dr. found during endoscopy. Suddently, I no longer am coughing. Don't know if it's a coincidence or something with being gluten-free.