Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Brainstorm My Pain-please !


jenvan

Recommended Posts

jenvan Collaborator

Hey there... I am looking for any ideas you might have as to what's going on with me!! I have been gluten-free for several months now and about 3 weeks ago I started getting a new kind of pain I have never really had before--mid abdominal pain that would come on gradually, get pretty intense and eventually disapate. It would be like a colic, come in waves and last anywhere from 30 min to 2 hours. The pain wasn't really cramping or gas related or anything like that--more like a persistant stomach ache or a twisty type of pain (if that makes sense!).

I was getting this pain mid to late morning and early afternoon. I had it about every day for 2 weeks. I have been gluten-free, and haven't changed my diet in any ways since going gluten-free. I had a gallbladder/liver ultrasound at that point that came back normal. However, it has persisted since then, and now I get the pain everyday, and it is more painful. Saturday I had a really bad attack and had to go to bed--had the severe pain, chills and felt really loopy.

My only hypothesis so far either gallbladder issues or another food intolerance (maybe?). I am calling my doctor today b/c I know sometimes gallbladder won't show up on an ultrasound...but maybe I am off on this one.

Any thoughts please ??


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



Celiac.com Sponsor (A8-M):



KaitiUSA Enthusiast

celiac3270 may want to tell you about what he had...the malrotation. I don't know all the symptoms he had with that but I know it was painful and it sort of sounds what you may be going through with you describing kind of a twisty feeling.

Maybe you are eating something that is causing problems. Have you tried keeping a food journal and mark whenever you get this. Maybe that will help pinpoint if it is any food.

Have you been "glutened" lately? If you have maybe it is a reaction.

Not sure what symptoms are but could you have a gall stone?

Carriefaith Enthusiast

I get severe upper midline abdominal pain. I get it so bad sometimes that I cannot move until it goes away. It's very scary. I had a few ideas on what it may be:

1) acute or chronic pancreatitis or

2) a reaction to gluten

I have had my pancreas enzyme levels checked (a blood test to see if your pancrease is working proporly), however, the blood test was taken when I wasn't getting the pain. I haven't got I call from my doctor, so I'm assuming those results were negative. Now for the gluten reations... I don't intentionally injest gluten but it is possible that I may get contamination and the severe pain is my reaction.

Good luck and I hope you find an answer to your pain.

Guest Viola

Another possibility is the 'illium' (sp) According to my doctor when one is accidently glutenized or is food intollerent, larger chunks of food will pass through the intestine and sit in a small pocket called the illium. This causes pain until it breaks down and continues to pass through. The pocket (pain) is usually slightly on the right side from center, and frequently confused with gall bladder pain. In fact I have been through many gall bladder checks over the years as that spot is always tender when I have my check ups.

anerissara Enthusiast

I'll have to check out that illium thing...that sounds remarkably like the pain I used to get all the time. It's pretty much gone (I've been gluten-free for about 5 months) but now I have a new pain in the *lower* right side of my tummy! Argh, it never ends. But, the illium explanation sounds like what was going on earlier...thought it was maybe gallbladder but it wasn't. Thanks!

Eliza13 Contributor

Over the years I've had a very sharp (double over) type of pain in my upper left abdomen, just below the ribcage. I had never connected it to celiac until now since my docs have said it is likely a muscle spasm. Hmmmm. Now I am wondering b/c I have read about the link between celiac and the pancreas. Can anyone shed light on this?

:unsure:

jknnej Collaborator

Skarlett, you want to check out the thread I wrote about chest pain. In it, I also talked about rib cage pain, just under the left or right breast. It hurts so bad when I get it that I can't move or breathe.

Another member said it might be a symptom of costochondritis. Google that and you'll see....


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



Celiac.com Sponsor (A8-M):



rmmadden Contributor

If you suspect a liver or gallbladder problem you could try doing a liver/gallbladder flush. I bought such a thing from Dr. Shulze's line of herbal remedy products and it is supposed to flush-out toxins from your liver/gallbladder and blood. People who have had these type problems swear that they go away after taking this product (even those who were slated for surgery).

Try visiting www.herbdoc.com or call 800-HERB-DOC.

Best of luck!

Cleveland Bob B)

Carriefaith Enthusiast

Skarlet13,

I did some research on this. Although I have seen a lot of improvements in some of my symptoms I still get them once in a while and I still get pain in the upper abdomen. Here is a thread that I started on this a while back:

Open Original Shared Link

Eliza13 Contributor

Thank you all for your replies. This is definitely something to think about and run by my doctor. I've only been gluten-free for 3 weeks and do feel much better, but it seems the more I research, the more I learn that my ailments are connected to celiac. I had so many symptoms that my doc did not feel it necessary to run tests, but I have questioned that approach. I often find myself wondering if there is something else there in addition to celiac.

Love,

Skar

jenvan Collaborator

Thanks for the ideas all. I went to my old gi doc today. (have an appt with one recommended by other celiacs next week). My old gi doc basically said, "huh, I'm not sure. It could be gallbladder, it could be reflux--maybe...let's run some tests and take some more drugs!") I am going to opt out of the CT scan for now. I feel like at this point I can try prevacid (for the hell of it) before I dump radioactive materials into my digestive system.

If my new gi doc doesn't have any ideas, I may be joining some of you in the SCD diet! I will be getting my food intolerance lab tests back in 2 weeks too. In the meantime I'm eating more "plain" food to help prevent another painful attack. :(

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,911
    • Most Online (within 30 mins)
      7,748

    Deborah anne
    Newest Member
    Deborah anne
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jack Common
      My old results (almost a year ago) are: The Tissue Transglutaminase IgA antibody - 0.5 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) The Tissue Transglutaminase IgG antibody - 6.6 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) Immunoglobulin A - 1.91 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) IgA Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) IgG Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) Deamidated gliadin peptide IgA - 0.3 U/ml (for the lab I did the tests 0.0 - 6.0 is normal) Deamidated gliadin peptide IgG - 46.1 U/ml (for the lab I did the tests 0.0 - 6.0 is normal)   Then I didn't eat gluten for six months and after I started a gluten challenge. Before the challenge I did some tests. My results: The Tissue Transglutaminase IgG antibody - 0.5 U/ml (for the lab I did the tests < 20 U/ml is normal)) Deamidated gliadin peptide IgG - 28 U/ml (for the lab I did the tests < 20 U/ml is normal)   During the challenge I ate 6 slices of wheat bread. After the challenge my results are: The Tissue Transglutaminase IgA antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) The Tissue Transglutaminase IgG antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.31 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgA - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Deamidated gliadin peptide IgG - 2.13 U/ml (for the lab I did the tests < 20 U/ml is normal)   To be sure I continued consuming gluten. I ate a lot each day. Two months after I did the tests again. My results I got today are: The Tissue Transglutaminase IgA antibody - 0.7 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.62 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgG - 25.6 U/ml (for the lab I did the tests < 20 U/ml is normal)   I didn't have any symptoms now except tiredness but I think it's just work. I'm not IgA deficient as you can see so I don't need to do this Deamidated gliadin peptide IgG test. But I do because it's sometimes not in the normal range. What do you think this time? I think I don't have celiac disease. But this test... 
    • Wheatwacked
      @plumbago, I found a good PDF on cholesterol:  Unlocking the mysteries of VLDL: exploring its production, intracellular trafficking, and metabolism as therapeutic targets I just started it, but it may have answers for us, with whacky cholesterol.  The pharmaceuticals don't seem to be interested in anything but statins.   "The nicotine in tobacco causes a decrease in the HDL cholesterol level. " Maybe you should start smoking? 🤪 I have high LDL and low HDL.  It is genetic mutations in the LDLR, APOB, PCSK9, or LDLRAP1 genes. My whole family is on statins for Familial Hyperliperdemia except me.  December I had ultrasound and cat scan for Carotid Artery blockage and both sides are above 85% blockage.  I started on Atorvastatin and that made me weaker than ever, even with CoQ10.  I asked for and got prescription for 2000 mg/day Nicotinic Acid B3 and in the 3 weeks my numbers changed. I am feeling realy good lately.  Stronger and more flexible.  Sleeping better.  Getting roto router (TCar) as soon as I get clearance from a cardiologist.  I expect that by my next blood panels in April to be even better. I am beginning to believe that like vitamin D where the RDA only accounts for preventing Rickets, the RDA for B3 is way underestimated.   From Oct 22 to Jan 17: A1c from 13.5 to 10.2 eGFR from 55 to 79 Triglyeride from 458 to 362 Total cholesterol from 245 to 264 HDL from 27 to 44 VLDL from 84 to 68 LDL from 134 to 154
    • plumbago
      I have taken thiamine on and off (just not at this exact moment), and I’m not sure it's made any difference. Yes, I almost always “fast” (12 hours NPO) for blood tests, as do a great many other Americans, so I tend to think that’s not it. All I can say is that the mystery continues. I could do some speculating here…well, heck, let me go ahead and speculate now: The lab ranges we all see on our reports are more or less the averages of Americans who have had those blood tests. Now, it’s up to you and me whether or not to think of the average American as healthy. I can make arguments both ways, more often than not, on the negative. My point here is that maybe the current range of HDL is somewhat skewed (ie, low), and maybe just maybe my super high (plus 100s) HDL results are not something to worry about; the range just needs updating. Why do I say this? Because pre-celiac disease diagnosis, my HDL values were in the normal range, but post celiac disease diagnosis, my HDL levels are way above average. See where I’m going? My trusty guidebook on celiac disease, Recognizing Celiac Disease by Cleo Libonati, RN, BSN, says that HDL increases after being on the gluten free diet. Or can increase, I guess. Then again, it could be something else. ¯\_(ツ)_/¯ In thinking of going to a cardiologist, I sort of fear that he/she will be dismissive of a link to celiac disease, treated celiac disease, and would not therefore be considering all possibilities. @trents I'm sorry you've been diligently working on your numbers to no effect. That must be frustrating. LDL is a world that is far better understood than HDL, so for you there's maybe less "mystery." Familial hypercholesterolemia is for sure something that can be tested. Outside of that, you're right, genetics can determine a general pattern.
    • trents
      Well, I have the opposite problem. My LDL has been moderately high for years. I eat healthy and exercise regularly but can't seem to move that meter. I used to be on a statin (and my doctors want me to go back on one) and it brought both HDL and LDL down but the ratios never changed. I think a lot of that cholesterol stuff is just baked into the genes.
    • knitty kitty
      Wow, @plumbago, Curiouser, and curioser... Have you been fasting?  Apparently HDL levels increase after fasting... https://ajcn.nutrition.org/article/S0002-9165(23)31185-7/abstract   I must say it, try taking some Thiamine.  Thiamine helps regulate lipoproteins... Thiamine helped lower HDL in this study whether they had diabetes or not. https://pmc.ncbi.nlm.nih.gov/articles/PMC3921172/#:~:text=Serum thiamine and its derivatives,supplementation (p %3D 0.009).
×
×
  • Create New...