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  • Celiac Disease Just Diagnosed

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    Old 01-31-2005, 03:31 PM   #16
    Losec20mg
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    Re: Celiac Disease Just Diagnosed

    hi shays..I have been on sooooo many PPI's..not even funny..but, ever since iv gone on this diet..my gutt has healed on all of the damage that was caused by the GLUTEN.. is healed..I feel great. This is a very healthy diet..I love to eat like this..all the things I couldn't of aten' before, I can eat them all now.. .. its a very complex diet, cuz wheat is in everything..I have a dictionary of all of the ingredients im allowed to have..heh.. you feel so good on this diet ..i made a short list on the other page

    no more PPI's
    no more antidepresants
    no more pills..just a multivitamine and, my diet

    Last edited by Losec20mg; 01-31-2005 at 03:33 PM.

     
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    Old 04-30-2005, 07:36 PM   #17
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    Re: Celiac Disease Just Diagnosed

    Hi, I wish there was a simple list of what to stay clear of. I don't know what additives I can and can't have. I know if I have had a good day or not by how I go to the bathroom in the morning. since I am new to this gluten free diet, I hate to say I have had more bad days than good. I am so discouraged. If any one has some answers or advice I would really love it-I'm sick of feeling lousy!

     
    Old 05-05-2005, 10:44 AM   #18
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    Re: Celiac Disease Just Diagnosed

    Shays mom,
    with a rash across your face and mouth sores (ulcers?) have you been checked for Lupus? Those are 2 of the 11 symptoms to diagose. There appears to be a higher incidence of Lupus (along with other autoimmune diseases) among celiacs.
    -Amy

     
    Old 05-07-2005, 07:24 AM   #19
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    Re: Celiac Disease Just Diagnosed

    amybee is right!! sounds like u might have Lupus....But it is reversible, like most chronic illnesses...Get the book "dangerous grains".. most autoimmune diseases are caused or complicated by gluten...You probably have some chronic infections also...I had 2 of them...Nasty little buggers....Find a functional medicine doc, who has the proper testing....best of luck

     
    Old 05-19-2005, 07:38 PM   #20
    PETALS1
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    Re: Celiac Disease Just Diagnosed

    Hello to all,
    Prior years I noticed the bloat after eating wheat but never related it to CD. 12/04 I noticed I was not the same person such as keeping up w/ the gym,work,housework etc. While on the treadmill I stumbled off it. My body felt as if I had weights on me. Fatiuge was overwhelming.3/04 I suffered a seizure(non epi).I was diagnoised as psuedo seizure. Hospitalized for observation. They found that I was anemic. Looking for the source I had a scope ran in july. Positive for CD.Since then I have put on lbs from 188 to 223.The doctor did change a medication re: seizures that might be causing some of the lbs problem. I have read cd can cause seizures, anemia infertility,short stature,and a few other. My Neuro I feel thinks it's anxiety/panic attacks. My GI don't really say seizures are from CD. I also was told CD would show up as a child. The thing that made mine show up per my primary md as a adult was extreme emotional stress. I have lost 3 parents in 5 yrs & 2 miscarriages.
    The diet can be hard to get on track, but it is worth it. I do fall off at times not aware of some ingredients.Boy it lets you know. Don't lick an envelope(gluten). I do have a rash down my arms and legs.
    sorry to go on and on! hope it helps
    Debbie

    Last edited by PETALS1; 05-19-2005 at 07:41 PM.

     
    Old 05-21-2005, 11:02 PM   #21
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    Re: Celiac Disease Just Diagnosed

    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

     
    Old 05-22-2005, 06:22 PM   #22
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    Re: Celiac Disease Just Diagnosed

    Hi, 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 ***** 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.

    Last edited by PatNJ; 05-22-2005 at 06:30 PM.

     
    Old 05-23-2005, 08:59 AM   #23
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    Re: Celiac Disease Just Diagnosed

    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

     
    Old 05-23-2005, 10:44 AM   #24
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    Re: Larry~ A couple more references

    Hi, 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.

     
    Old 05-24-2005, 06:36 PM   #25
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    Re: Celiac Disease Just Diagnosed

    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.

     
    Old 05-24-2005, 07:42 PM   #26
    Losec20mg
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    Re: Celiac Disease Just Diagnosed

    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..

     
    Old 05-24-2005, 08:43 PM   #27
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    Re: WOlfman67

    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.

    Pat

     
    Old 05-25-2005, 01:23 PM   #28
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    Re: Celiac Disease Just Diagnosed

    Hey Wolfman,

    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...

     
    Old 05-25-2005, 04:06 PM   #29
    Losec20mg
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    Re: Celiac Disease Just Diagnosed

    hi thomas, why are you saying around a full moon.?? i know you know your stuff.

    Last edited by Losec20mg; 05-25-2005 at 04:07 PM.

     
    Old 05-25-2005, 04:20 PM   #30
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    Re: Celiac Disease Just Diagnosed

    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.

     
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