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

Can/are These Sypmtoms Of Celiac/gi?


SweetAmber32

Recommended Posts

SweetAmber32 Apprentice

In Dec 2006, a day or two before New Years Eve I was hospitalized, for DVT-Deep Vein Thrombosis, AKA Blood Clot. Not only that, according to medical papers, I was reading the other night, from that stay, I had a couple of blood clots in my right calf and was critical. Normal range for no blood clots is 0-552. I was shocked to see the my level was over 10,000. :o Talk about shocked. I was not a couch potato, mind you. Though my weight was continuosly going up. That may have caused the blood clots. But I'm curious, is that a symptom. Also this last August I noticed while looking at the back of my throat, as I had developed tonsil stones, my tongue had swelled up and there were these weird growths on my tongue. My tongue looked like it had skin tags and large lumps. When i saw my Doctor last month and got diagnoised with GI, he said theat the weird looking things were my taste buds. Now since going gluten-free, my mutant taste buds are reducing in size. It was the weirdest thing. Is this another possible symptom? Or was I abducted by aliens and was apart of some alien experiment? :P


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



Celiac.com Sponsor (A8-M):



Morrisun Newbie

To my knowledge clots are not a symptom of celiac disease. I'm sorry you had to go through that! I had multiple PE's in 2005, caused by birth control pills. Do you have any clotting disorders?

SweetAmber32 Apprentice

I don't know if I have a clotting disorder. I have no insurance, not even then, so they only treated me for my time there. My Doctor did constant blood work to make sure my levels were acceptable. But I had to stop the tests as my parents were the ones paying for my medical tests and they are on limited income. So I'm on aspirin therapy. But sometimes I wonder if I have clots again as my calf will ache at times, like it did when I went to the hospital. I too had been on birth control then. But I do not think that was the cause. I had literally only been on them for 5 weeks and to be that critical? I have been battling ill health for two years now. While, now I believe my GI had worsened in Virginia, but when I moved to Oregon I started work as a caretaker for Residents with Alzheimers. I started the hepatitis B shots. I only got two, as after getting getting the second, I went downhill. So maybe with everything my poor body was fighting, I ended up having to fight blood clotting. Who knows. I was curious to see if there was a correlation with GI and clots. I'm sorry too that you went through that. Scary experience huh? Other than being born in the hospital I never had to be a patient in one. I was so scared I stayed awake for 36 hours. Luckily there had been a Law and Order Marathon going on. :P Thanks for the response.

georgie Enthusiast
I don't know if I have a clotting disorder. I have no insurance, not even then, so they only treated me for my time there. My Doctor did constant blood work to make sure my levels were acceptable. But I had to stop the tests as my parents were the ones paying for my medical tests and they are on limited income. So I'm on aspirin therapy. But sometimes I wonder if I have clots again as my calf will ache at times, like it did when I went to the hospital. I too had been on birth control then. But I do not think that was the cause. I had literally only been on them for 5 weeks and to be that critical?

Yes - Birth Control Pills could do that to you if you have a blood clotting disorder like Factor V Leiden ( FVL) or APS. Do you smoke ? STOP ! You need to run to a Dr fast and be tested to see if you carry the gene. Aspirin doesn't work for FVL and venous clots. Good sites www.fvleiden.org Open Original Shared Link My calf used to ache a lot for years after my DVT - Drs called it Post Thrombatic Syndrome. But now I take Nattokinase I find I am better.

SweetAmber32 Apprentice

I never smoked, am allergic to it.

But now I take Nattokinase I find I am better.

What is Nattokinase? As to the Factor V Leiden ( FVL) or APS. I have no way of getting that done at this time. I'm trying to get on the OHP (Oregon Health Plan) or if I continually get better and find I can go back to work I'll get the test done then. Thanks for the response.

Morgan

georgie Enthusiast

Nattokinase is a natural soy remedy that some people claim works to dissolve micro clots before they turn into big ones. Its not FDA approved as Natto is a natural food in Japan ( been used for 1000 years ). It doesn't thin the blood like warfarin so I have read of some people taking both - warfarin and Nattokinase. If you use it - make sure you get the brands that are NSK-SD on them. Take care. You need those blood tests.

APS is an autoimmune disease and I am curious how you said you got worse after Hep shots ? Are they live vaccines ? I have just learnt that people with autoimmune diseases shouldn't have live vaccines - and I had a chicken pox vaccine in 2001 and by the next year is about when I started to get really ill. I am being tested for another autoimmune diesase now ( my 6th) which Dr thinks I may have had since teens but had gone into remission for a long time. Now seems its back again.

SweetAmber32 Apprentice

Sorry it took so long to get back to you.

APS is an autoimmune disease and I am curious how you said you got worse after Hep shots ? Are they live vaccines ?

I don't know if the Hep B shots were live or not. I've had vaccines before, with seemingly no problems. Thinking back on everything though, before I moved to Oregon, I lived in Virginia, I one day woke up for work and felt horrible. I was soooooo bloated I could not button or zip my pants or the lower buttons of my shirt. Soon after that i started belching, had heart burn and acid reflux. So I was diagnoised with acid reflux. I was given meds that did not help, except to expand my waist even more. When we moved to Oregon, so after arrivng here my mother nearly died from a massive internal infection. Within a couple of months of being here knowing my mother was getting better, I got a job taking care of Alzheimer residents. Hep B vaccine was recommended and I flt i should, not just because of the residents but because of my mother. I got the first shot in May of 2006. I felt a bit yucky but I attributed it to tiredness, stress. I did start to trip over my feet and forget somethings, again I was tired and stressed. The second shot was in Aug 2006. Not only did my tripping get worse, I had to write reminders on my arm at work only to forget I had written reminders. My weight in one month went up 20lbs. My nose and cheeks got red and still are red. I would fall asleep constantly. I hurt everywhere. I developed pain points. I had eye ticking..........I could go on and on. I saw my OBGYN in Nov 2006 and she saw the redness across my nose and cheeks and said i should be tested for Lupus. My reg. Physician who I saw, before the OB ran blood tests. I saw him because i had gone to Emergency for sharp intense pain in right arm that Aug, right after second shot. Emergency said I probably had Carpal Tunnel. After i saw the OB that Nov I got worse and had to cut my scedule to less that p/t. Christmas Eve I worked. Christmas Day I had sharp intense pain in my right leg and did not feel right. I called out of work for the next day. Something told me I had to. Glad i did as I woke up the next day my right calf felt like i had severly sprained it. I went trough the next four or five days limping and feeling weird. Not only was I feeling weird but my dogs and cats were acting strange too. They would not leave me alone and kept hovering over me. My parents wanted me to gor to Emergency but I could not afford it. My dad went to my work to get my work scedule and my boss changed everything, more hours and harder areas of care. I knew i could not do it so I had my dad take me to emergency. They called me in, the Doc checked me over, listened to me describe my problems I'd been having and ordered blood work. Next thing i know a I was getting an ultrasound of my legs. The woman, during the checking of my right leg, said Uh Oh and said the was done and left. The Doctor came in with a look of horror on his face and said I was being admitted. I had a bloodclot in my right calf and I was critical. Now i had a look of horror on my face. Before i left Virginia I had just graduated from Medical Assisting courses. I knew what blood clot meant. I was hospitalized for nearly five days. I was never able to go back to work, I felt deep down I was not going to be able to make it. And I would not have as I got worse. This last Aug my parents took me to a Rheumatologist and I was diagnoised with Fibromyalgia. In Jan I ate some seitan and had a reaction from it. When my reg. Doctors appt came up, I purposley ate seitan again to see if I'd have a reaction again and to show my Doc that I was not being a Hypochondriac. I had a worse reaction. He took one look at me and said no more seitan as I'm GI and maybe Celiac. Again because of no money or health insurance I could not get the major tests done. So I been gluten-free for over a month now and feel a lot better. And hopefully will continue to get better. My Doc also prescribed Cymbalta, which has help with the Fibro. and a plus with my depression. If I have an autoimmune issue, that is unknown. I have had numerous blood tests which come back negative or inconclusive. I've always had stomach problems since I was a kid, so I believe I've dealt with the GI/Celiac issues for years, I'm 34 yo now. I do know to from researching that there have been severe side effects from the Hep B shots. The woman who helped to create the vaccine, her brother got the shots and now has MS. Her assitant got them and she's now blind. The woman who helped create the vacinne has come to the conclusion, from hearing from other "victims" of the vacinne, that it is a dangerous vacinne and needs to be pulled off the market. Vaccines can be dangerous. I empathize with you. I hope you get answers to your new autoimmune disease. You take care yourself.

Morgan Cole


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



Celiac.com Sponsor (A8-M):



itchygirl Newbie

I hope you can get on the Oregon Health Plan soon.

Here is a fun article about celiac associated disorders

Open Original Shared Link

SweetAmber32 Apprentice

Thanks itchygirl. Interesting article. I'm going to print it out for my parents to read. I hope i get on the Oregon Health Plan too.

Morgan

Archived

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

  • 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. - trents commented on Scott Adams's article in Kids and Celiac Disease
      2

      New Study Reveals Age and Racial Gaps in Pediatric Celiac Testing

    2. - Russ H replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Positive biopsy

    3. - Scott Adams replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Positive biopsy

    4. - Scott Adams commented on Scott Adams's article in Latest Research
      3

      New "Glowing Bacteria" Pill Could Transform Gut Disease Detection (+Video)

    5. - trents replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      7

      Help understand results

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,001
    • Most Online (within 30 mins)
      7,748

    bonniebeebe143
    Newest Member
    bonniebeebe143
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Russ H
      What you describe is seronegative villous atrophy (negative antibody tests but positive biopsy). It is uncommon in coeliac disease, and there are other causes, but the most common cause is coeliac disease. I would pursue this with your healthcare provider if possible. Based on clinical history, test results and possible genetic testing for susceptibility to coeliac disease it should be possible to give a diagnosis. There is a bit more here: Seronegative coeliac disease
    • Scott Adams
      If you are still eating gluten you could get a celiac disease blood panel done, but I agree with @trents and the gold standard for diagnosing celiac disease would be your endoscopy results. Is it possible they did do a celiac disease panel before your biopsy? This would be the normal chain of events. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • trents
      Actually, it would be more correct to say that the genetic potential to develop celiac disease is passed down from parents to children. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% of the general population actually do. But it is also true that the offspring of those who do have active celiac disease are at a considerably higher risk of developing active celiac disease than those of parents who have the genes but don't develop the disease. Some recent, larger studies put the risk at near 50% for the first degree relatives of those who have active celiac disease.
    • Jordan Carlson
      Hello everyone! Been a while since I posted. The past few moths have been the best by for recovery for myself. I have been the least bloated I have ever been, my constant throat clearing is almost gone, I have stopped almost all medication I was prevously taking (was taking vyvanse for adhd, pristiq for anxiety,fomotadine/blexten for histamine blockers and singulair). Only thing I take now is Tecta. I also no longer get any rashes after eating. Things are going very well. Most success came actually once I upped my B12 daily dose to 5,000 mcg. I do have one thing I am un able to figure out and want to see if anyone else has this issue or has experience working around it. Ever since I was born I have always had a issue getting fruits and veggies down. No matter how hard I tried, it would always result in gagging or throwing up. Always just thought I was a picky eater. Now that my stomach and system has healed enough that I can feel when something is off almost istantly, I notice that after eating most fruits (sometimes I am ok with bananas) and veggies, my stomach instantly starts burning and my heart starts to pound and I get really anxious as if my body doesnt know what to do with what just enetered it. So I am thinking now that this is what probably was going on when I was born and my body started rejecting it before which caused this weird sensory issue with it causing the gagging. Hoping someone has some exprience with this as well because I would love to be able to enjoy a nice fruit smoothie once in a while haha. Thanks everyone!
    • wellthatsfun
      i know i've been rather cynical and sad about being fully diagnosed in june 2025, but my boyfriend has been consistently showing me the wonderful world that is gluten free cooking and baking. in the past couple of days he's made me a gluten free rice paper-wrapped spanakopita "pastry", plus a wonderful mac and cheese bechamel-ish sauce with gluten free pasta (san remo brand if you're in australia/if you can get your hands on it wherever you are).  those meals are notably gluten free, but mainly he's been making me easy gluten free meals - chili mince with white rice and sour cream, chicken soup with homemade stock from the chicken remains, and roast chickens with rice flour gravy and roast veggies. i'm a bit too thankful and grateful lol. how lucky could i possibly be? and, of course, for those who don't have someone to cook for them, it's quite easy to learn to cook for yourself. i've been making a lot of meals for us too. honestly, cooking is pretty darn fun! knowing basic knife skills and sanitary practices are all you really need. experimenting with spices will help you get on track to creating some really flavourful and yummy dishes. coeliac is a pain, but you can use it to your advantage. healthier eating and having fun in the kitchen are major upsides. much luck to all of you! let's be healthy!
×
×
  • 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.