Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Possible Cd?

Larteun

Recommended Posts

Larteun Newbie
Larteun
Posted

Hello I'm new to the site. I haven't been diagnosed with celiac disease, but after being made aware of the disease by a friend, I find I have many of the symptoms.

After 6 months and many tests my alkaline phosphotase level had reached 1700+ and my family doctor referred me to a gastroenterologist. He determined the alka. phos. was coming from my liver verses my bones. I noticed high alka. phos. levels is one of the symptoms, but it seems the source is usually the bones not the liver. Am I correct? Or can celiac disease cause the liver to increase these levels?

The first thing the gastroenterologist did was put me on 40 mg of prednisone and within a few days I lost the blotted feeling, sever headaches, body aches, and fever. A liver biopicy indicated it could be autoimmune hepatius, but the sample wasn't large enough to be conclusive. After a a few weeks he suggested another biopicy to confirm, and it turned out negative, my liver was in good shape with no damage. The prednisone brought my alka. phos. levels down, and he started to wean me off. The first day completely off my headaches and fever returned. He checked my blood again to find the phos was rising again.

Now I'm on 20 mg a day and it seems to help some, but not as much as originally. I'm taking 600mg ibuprofen 2-3 times a day. I've been through about every test imaginable except my small intestine. I've also seen an infectious disease doctor and an alergist with no results. I see the gastroenterologist again in 2 weeks, and will ask him about celiac disease. He hasn't made any mention of it being a possible cause of my problem, he did say he thought my liver problem was a secondary problem caused by something else.

Sorry this is so long, the main question I have is has anyone know if alka. phos. elevations from the liver can be a result of celiac disease? I want to go to the doctor with as much info as I can get. Thanks for any help, Larry

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


cdford Contributor
cdford
Posted

Mine is out of range as well and it is definitely my liver as a result of the celiac disease. The simplest way to determine if celiac disease is your problem is to have a celiac panel (blood work) done. It will tell you much.

Larteun Newbie
Larteun
Posted
  • Author

cdford

Thanks for the response, it may sound strange but this is the best news I've received since seeking medical help for my symptoms. :D

After countless tests without any answers I was finding myself wishing that the next test would find some problem just to give some direction to an end of my misery. I missed so much work the last 2 years, there was a lot of financial stress added to my already miserable list of symptoms.

My spleen is also enlarged and I see that celiac disease is said to effect among other things the spleen, liver, and gall bladder. I have beta thalassemia and I was told this anemia disease is the cause for that.

My gastroenterologist seems to be an excellent doctor. I'm pretty certain he will be more than happy to persue celiac as the problem if I bring it to his attention. From some of the posts I've read it appears many doctors are ignorant about celiac disease.

Thanks again, your confirming the possible relationship between my liver disorder and celiac disease, at least lifted my spirits and I'm looking forward to having this test and hopefully putting these symptoms behind me. :)

Larry

cdford Contributor
cdford
Posted

Glad to be of help. I hope your gastro doc is as helpful as my first was. It is so much easier when you have support. Make sure you get any testing done prior to going gluten-free to ensure quality test results. Even then, it is possible to get a false negative just not as likely. You may be surprised at how much you will improve after being gluten-free for a while if the root of the problem is really celiac disease.

Larteun Newbie
Larteun
Posted
  • Author

So far I really like my gastro doc, he seems very concerned about finding the solution to my problems. In the last 4 months he has personally called me at home 11 times. I'm not used to that personal touch from a doctor. :)

That fact that he has made no mention of celiac disease as a possibility seems to be the general lack of knowledge about the disease among most doctors. That's why I want to get as good an understanding of celiac disease before disscussing it with him.

This site has a wealth of info and I'm picking up alot of it here. When the general medical industry as a whole is somewhat ignorant about such things as celiac disease, I feel there's great value in the opinions of the people who are/have gone/going through this condition.

Will be talking to the doc later today. Thanks to all for helping me get some understanding of celiac disease.

Larry

skbird Contributor
skbird
Posted

Interesting that a high Alk Phosphatase is indicative of celiac disease. I have not been diagnosed with celiac disease but gluten-intolerance, yet my Alk-P has always been lower than the normal range.

My doctor always blows over it, saying no biggie - only worry when it's high. But I did some research and found a reference that says it could indicate pernicious anemia (deficient in B12) so I'm taking that on a regular basis now.

Thanks for the info.

Stephanie

Larteun Newbie
Larteun
Posted
  • Author

I go in for the blood test tomorrow morning. My gastro doc said he had patients with celiac disease, but didn't think I fit the profile but was happy to explore any possibilities at this point.

I'm not going to wait for the results of the test before starting the gluten-free diet, I'll start it tomorrow after the test.

I was on the atkins diet for 3 months a couple of years ago, probably wasn't completely gluten-free as I wasn't concerned with gluten and eat some processed meats and dressing that may have had gluten added. But I did feel alot better when on it than I had before and since. I figure going gluten-free will be easier than atkins cause I can still have my taters. :) Just have to watch what I put on them, and any seasoning I use on meats.

Thanks for the help, Larry

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      15

      My only proof

      Years ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came...
    2. Rejoicephd
      - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

      Wow what a helpful article!! I am just seeing this now but I hosted a small group of family for Thanksgiving at my house this year and I did some of these things- got a butterball gluten-free turkey, got gluten-free stuffing, had a few gluten-free sides, and a gluten-free nothing-Bundt-cake. I had other non gluten-free things there too for others, and I also...
    3. Scott Adams
      0

      Rainforest Cafe Fined After Child's Severe Allergic Reaction: What It Means for Gluten-Free Safety

    4. marion wheaton
      - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    5. trents
      - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,420
    • Most Online (within 30 mins)
      7,748
    maggie23
    Newest Member
    maggie23
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Mari
      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.