I haven't been tested for celiac yet but after a friend alerted me to it I intend to ask my gastroenterologist about it when I see him in 2 weeks. I to have been tested for just about everything else imaginable with no results. I have many of the listed symtoms of celiac from (celiac.com). I'm 53 y/o, and my health has been going steadily down hill the last few years at a progressive rate.
Originally the doctor put me on prednisone because my alkaline phosphotase level was elevated to 1700+, the highest he said he had ever seen. The prednisone brought the alka phos back down, but only until he weaned me back off the prednisone when they started to elevate again.
The alka phos in my blood was determined to be coming from my liver rather than my bones. Does anyone know if this is a chacteristic of celiac? The only reference I've found pertaining to akla phos and celiac has been bone related.
I also have beta thalassemia, is anyone aware of a relationship between this anemic disease and celiac disease?
From what I've read about celiac disease, many doctors are not all that familiar with it. I'd like to know as much about it as possible before seeing the doctor. Any helpful info would be appreciated. Thanks, Larry
I'm very sorry to learn about your elevated ALP levels. I hope that further testing will not indicate that something very serious is going on.
On the WebMD Health site, I found the following reference to celiac disease and ALP:
Low values
Conditions that lead to malnutrition (such as celiac disease) or are caused by a lack of necessary nutrients in the diet (such as scurvy) can result in low ALP levels.
I guess you can rule out celiac disease as the cause of your elevated levels.
All the best of luck to you.
Pat
EDIT: Duplicate posts on different forums are not allowed, but once you've seen the gastroenterologist, you might want to start a thread on the Liver Disorders forum.
Hi Pat
I understood CD could cause adverse effects on other organs than just the digestive tract. The liver, spleen, and gall badder particularly. High blood counts of alp can come from different sources like the bones and liver, mine is definitely coming from the liver. I think it has something to do with the bile ducts not functioning properly in regard to the liver.
In a way I hope you're wrong. My gastro doc is running out of ideas as to whats causing this. Thanks for the info, Larry
You are absolutely correct that celiac disease can affect organs other than the small intestine, but its effect on the liver do seem to be related to malnutrition.
I found the following online in a PowerPoint presentation. I regret that I was unable to find an author or other source for attribution. I include this excerpt because of its reference to Vitamin D deficiency.
Extra-Intestinal Manifestations (of celiac disease--P) Nutritional deficiencies:
Iron deficiency anemia
Folate/B12 (anemia, glossitis, peripheral neuropathy,
Vitamin K (coagulopathy, purpura) Vitamin D which can lead to hypocalcemia/tetany, elevated ALP, and osteoporosis
Protein (edema, ascites)
Vitamin A (night blindness)
The next excerpt is from an article found on Medscape. The passage includes a reference to CD and the liver. As I read it, elevated ALP levels can occur in celiac patients, but its effects are implicated in bone disease, not liver disease. This seems to be consistent with the information that you have already found on the topic.
http://www.medscape.com/viewarticle/500797_1
In a study of 67 patients with abnormal liver biochemistry and coeliac disease, five patients were noted to have a raised alkaline phosphatase. All were found to have osteomalacia. Secondary metabolic bone disease was also found as a cause for isolated alkaline phosphatase (ALP) elevation in six of 12 patients with untreated coeliac disease.
What other tests have you had to date? Have all forms of liver disease been ruled out?
Hope you and your doctor can get to the bottom of this soon.
Best,
Pat
P.S. I just reread your first post and saw that you mentioned that you have beta thallassemia. Anemia is a common symptom of celiac disease, but I am pretty sure that it is the iron-deficiency kind, due to malabsorption. My understanding is that the thallassemias result from rare genetic mutations. I hope you're seeing a hematologist for that disorder.
I have a white, almost pasty substance always on the back end of my tongue. Is this Gluten?
I noticed that whenever I eat at fast food places the bread kills me for two days. I am totally done with Subway and Arby's!
I still haven't gotten tested for Celiac, but I did have my stool tested for parsites which came back negative.
I stopped taking PPI's (pepcid,prilosec, etc.) becuase I read about the many side-efects they can cause. They actually can do more damage than good.
I started taking a liquid multi-vitamin in the morning along with a Magnesium supplement.
I'm tellin ya, forget doctors and try seeing a nutrionist instead. Drink plenty of water and eat more veggies and fruits!
I'm still not 100% better, but Rome wasn't built in a day.
just to let you know, that if you are following a gluten free diet, it will take some time to adapt, and, the healing of the gutt can take 1 to 3 years of strict dieting..but be careful because you can put on wieght very quickly..i did put on wieght 65lbs in 15 months..just telling you...im a very succesful celiac and, i can eat just about all of the best foods out there.. good luck to everyone..
The white area on the back of your tongue sounds like yeast (candida). In the mouth it is often referred to as thrush. You'll probably need to see your doctor about getting some anti-fungal lozenges or a mouth rinse to clear it up.
Why eat bread if it makes you sick? It's so obvious that your gluten intolerant. You're playing with your life if you keep eating junk..The reason you tested negative for parasites is because they are not detectable until the gut heals.. stay away from gluten and check for parasites in 4-6 months. Make sure you get tested for parasites around a full moon...
I guess I wasn't sure what kind of bread was bothering me the most.
Another thing I seemed to have a problem with was an apple I ate today. A big red one. It felt like it was swimming in my stomach. For lunch I ate a veggie burger on gluten free bread and then someone gave me some chicken chow mein. I ate it and only seemed to burp about three times later in the day. I put some extra hours in at work becuase I felt so energized. I know I haven't been getting many carbs lately.
I am going back to keeping track of my food intake after a two day absence.
just to let you know, that if you are following a gluten free diet, it will take some time to adapt, and, the healing of the gutt can take 1 to 3 years of strict dieting..but be careful because you can put on wieght very quickly..i did put on wieght 65lbs in 15 months..just telling you...im a very succesful celiac and, i can eat just about all of the best foods out there.. good luck to everyone..
cuz im finally absorbing the foods that i eat..plus i eat alot..and, also i was very underwieght sooooo, i needed to put on wieght..now im at 172lbs im 5'9" 39years old male. .. im doing really well
Thanks for your reply. I'm glad to hear that you're doing well. If you didn't have CD, would you not eat gluten? Just curious b/c there seems to be some controversey over whether gluten poses health risks.
now that i know what gluten is, I will never eat it again even if the docs would tell me i could eat it..the gluten found in wheat is not as friendly as the gluten found in corn or rice..it is very sticky..it gives the impression that you are well nurioused but, you are not.. like I said I have great success without the gluten...all of the symtoms that iv lived forever have vanished for good.. .. gluten is not an ingredient, it is a preservative..also found in most MSG's and, sulfites may contain gluten as well..so food can gain more shelf life..and, i know most of the foods containing gluten are dead foods..certain low gluten breads are ok..the rest gotto go
the ones that are better for the health are
kamut
spelt
sprouted
buckwheat
im eating 5 grain bread
rice, tapioca, buckwheat, corn, millet
also eat whole grain rice pasta
and, home made pizzas with my special flours..
i always feel lite and, have alot of energy somtimes i dont even sleep..LOL
I am eating so much better than I was, but my skin looks so transparent! If I pull my skin away from my body it "snaps" back. I can see veins running along the side of my ribcage that were never visible before.
I have strength to exercise but should I ease off of lifting weights? I just bought a bunch of fruit and I have been making my own shakes with Egg Protein powder mixed in. I'm still taking my enzymes to help me with digestion too. I was also informed from the GNC sales guy that I should take a Multi-Oil formula conatining Omega 3 ,6, and 9 Fatty acids. Sheesh...I just have a feeling I am missing the mark on this. That maybe it's not a malnutrition problem afterall.
Could I have cancer?
you are right Ben, ive been celiac for the past 16 months and, feel great..i eat very healthy never cheat..gained like 70bls..im happy..and, the variety is great.. thanks oh and, no more acid reflux..and, no more pills
My gastro doc is running out of ideas as to whats causing this. Thanks for the info, Larry
Re: Celiac Disease Just Diagnosed 
