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

Another Autoimmune Disease

Jinxy

By Jinxy
in Related Issues & Disorders

Recommended Posts

Jinxy Newbie
Jinxy
Posted

In 2007 I was operated on my spleen, part of pancreas and part of liver removed, each bit biopsied and the growths in the lymph nodes 7 at that time diagnosed as Sarcoidosis, by 2009 this had spread to kidneys cervix, lymph nodes in neck and two flairs in brain. At the same time in 2007 I was diagnosed with osteoposis with a T score of -3.1 at this point I was 31 years old.

By 2009 I had several more growths in my organs and lymph nodes, plus 2 flairs in the brain and my first meningioma in the brain. I was also having problems with my stomach, colon, bowel - this had been going on for over 10 years since I was 19 and in that time I had had numerous colonsocopy's with polyps removes, severe inflammation and my test had always been described as "non conclusive for celiac". However in about 1999 they stopped looking at my stomach issues when they discovered a tumour of unknown origin on my pancreas/duodenum and I was left without explanation for my stomach issues. My weight however had dropped to 80lb.

My Dr's now have retested but said again its inconclusive because of my other autoimmune conditions, there are physical signs of inflammation, all my symptoms fit the profile and they tried me on a gluten free diet. I have to admit since I went gluten free I feel much better, but the question is can all these other diseases interfere with a diagnosis. Could my treatment, [i've been on steriods, MTX, remicade, autoimmune suppressants (anti-rejection drugs), topamax for epilepsy, cymbalta for pain, aclastar for osteoprosis, calcium, folic acid, with prolonged periods of antibiotics and anti-inflammatories ] mask the illness or cause it to seem like celiac?

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

Celiac.com Sponsor (A8-M):


Newbee Contributor
Newbee
Posted

I'm sorry you've gone through all of this. I don't know if your treatment could mask the illness, but if you find thyat going gluten free is helping you then it seems reasonable to continue. Good luck!

Skylark Collaborator
Skylark
Posted

Oh gosh, that sounds terrible! Most of the celiac tests look for autoimmunity so it seems to me that your immune suppressants might mask celiac disease. Celiac can really mess with calcium absorption and cause osteoporosis. It's also a risk factor for duodenal tumors so to my way of thinking it sort of all fits together. Gluten intolerance is also pretty common and it can cause a lot of inflammation and stomach trouble with negative celiac tests so that could be your issue too. I'm glad your doctors had the sense to try you on the diet and that it's helping.

Gemini Experienced
Gemini
Posted

In 2007 I was operated on my spleen, part of pancreas and part of liver removed, each bit biopsied and the growths in the lymph nodes 7 at that time diagnosed as Sarcoidosis, by 2009 this had spread to kidneys cervix, lymph nodes in neck and two flairs in brain. At the same time in 2007 I was diagnosed with osteoposis with a T score of -3.1 at this point I was 31 years old.

By 2009 I had several more growths in my organs and lymph nodes, plus 2 flairs in the brain and my first meningioma in the brain. I was also having problems with my stomach, colon, bowel - this had been going on for over 10 years since I was 19 and in that time I had had numerous colonsocopy's with polyps removes, severe inflammation and my test had always been described as "non conclusive for celiac". However in about 1999 they stopped looking at my stomach issues when they discovered a tumour of unknown origin on my pancreas/duodenum and I was left without explanation for my stomach issues. My weight however had dropped to 80lb.

My Dr's now have retested but said again its inconclusive because of my other autoimmune conditions, there are physical signs of inflammation, all my symptoms fit the profile and they tried me on a gluten free diet. I have to admit since I went gluten free I feel much better, but the question is can all these other diseases interfere with a diagnosis. Could my treatment, [i've been on steriods, MTX, remicade, autoimmune suppressants (anti-rejection drugs), topamax for epilepsy, cymbalta for pain, aclastar for osteoprosis, calcium, folic acid, with prolonged periods of antibiotics and anti-inflammatories ] mask the illness or cause it to seem like celiac?

Jinxy.....I have 4 autoimmune diseases myself and know a lot about them. My brother also has Sarcoids so I am familiar with that. Let me say this....all of your AI problems are related to Celiac Disease and that could be the reason why you have so many problems. If you have been eating gluten all your life and don't know you shouldn't be eating it, it can cause such severe inflammation that other organs become involved. The immune system will keep targeting other organs if you keep eating wheat.

Now, you go to the doctor and they try and do testing for Celiac and if they don't get a conclusive result back, they will not recommend the gluten-free diet.

Some of the meds you have been on over this time period will absolutely skew test results for Celiac because they suppress the immune system. Why doctors don't understand that is beyond my realm of understanding but it is what it is. Most people with AI problems all run into doctors who do this to them because none of these medical people think outside the box. They test and if the test is negative, it's over and they tell you they don't know.

You need to be gluten-free for the rest of your life because you have suffered enough.

My brother has as many AI problems as I do and he is a mess. I have recovered very well and am doing good right now. You know why? His doctors refuse to believe he has Celiac and he has been tested. But like yourself, he is on a myriad of meds which could affect testing. My brother has Celiac, like I do, and I would bet a month's pay he has it. He will not go gluten-free and he will be lucky to live to see 65 years old. I, on the other hand, have stabilized my AI problems with the gluten-free diet and exercise and feel pretty good, overall. You can too! BTW...I have osteoporosis in my spine from Celiac Disease and am doing weight training to make it better. I do not take meds for it. I haven't been re-tested as of yet but hopefully, that will resolve. It's harder for me as I am post-menopausal.

You may not be able to get an official diagnosis but I would not wait to go gluten-free. With your medical history, you scream of Celiac Disease. You felt better once when you did a dietary trial but it takes a long time to heal and see significant improvement. Please believe that you most likely have celiac disease so revisit that dietary trial! Good luck and I hope you feel better soon......I know how you feel as I was down to 97 pounds at diagnosis and it's the pits!

GFinDC Veteran
GFinDC
Posted

Hi Jinxy,

It seems there just isn't a foolproof 100% sure test for celiac disease yet. The tests are very reliable when they are positive, but when they are negative that doesn't mean you don't have it. Since people often don't "pass" the tests, or rather they don't get a reliable indication from them, it is always a good idea to try the gluten-free diet for 3 to 6 months and see if there are any improvements. Celiac can cause mal-absorption which can cause lots of symptoms by itself. People sometimes are low on vitamins because of celiac, like A, D, E, K and B vitamins. Iron may be low too. Getting those levels tested and can be a helpful thing. May the Good Lord bless you in your quest for better health. :)

As you can see by the meal threads below, it is easy to find food to eat with a little thought and some experience.

FAQ Celiac com

http://www.celiac.co...celiac-disease/

Newbie Info 101

http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?

http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?

http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?

http://www.celiac.co...ooking-tonight/

Dessert thread

http://www.celiac.co...399#entry802399

How bad is cheating?

http://www.celiac.co...t-periodically/

Short temper thread

http://www.celiac.co...per-depression/

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
      132,422
    • Most Online (within 30 mins)
      7,748
    HAUS
    Newest Member
    HAUS
    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.