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

They Keep Taking Parts Out!

Harlygirl

Recommended Posts

Harlygirl Newbie
Harlygirl
Posted

Hi everyone, I found this forum while doing some research today about celiac disease. I was told told that I had "markers" for the disease. I have no idea what they meant by that. And even after asking the docs they really didn't explain themselves all that well. Sorry, I'm getting ahead of myself. I have always seemed to have some kind of health problem. Severe migraine, acid reflux, and stomach pain due to anxiety from the age of 7. To bring you up to present, for the past 5 years out of the blue I would get violently ill. Nausea, vomiting,and at the end of the attack diarrhea. Before the attack happens I get the worst gassy egg taste in my mouth. It lasts though out the attack as well. I always know when I'm going to get sick just because of this horrible taste! Has anyone had this happen? The docs Have tested and re-tested for everything. I've been treated for the Giardia parasite. Then I was told I was chronically constipated. And to drink a laxative mixed in water 3 times a day. Still nothing. :( The next step was my gallbladder was taken out, then my appendix. I had an attack just a few days ago. So it was not my appendix. I'm scheduled for a hysterectomy in march. I'm not sure what will happen after. But one thing I do know that I am scared to eat anything other than a brand of beans that I know to be safe. Can anyone give me some advice on where to begin? It would be greatly appreciated.

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

Celiac.com Sponsor (A8-M):


ctenny Rookie
ctenny
Posted

I've not had any of my organs taken out. I'm sorry, I can't help you there. Hopefully, they'll let you keep what you have left.

As for the markers, that is a genetic term used to refer to alleles. You tested positive for having either of the 2 common Celiac genes (DQ2 or DQ8). This does not mean you have Celiac, by itself. Having these genes is required to be diagnosed with Celiac and it also predisposes you to either acquiring it or already having it. Being positive for the Celiac markers does give you a good chance of having it, and so with a positive markers test and other positive bloodwork/endoscopy, you could be a Celiac.

maximoo Enthusiast
maximoo
Posted

hysterectomies are the #1 unnecessary operation in the US. What are ur symptoms concerning your uterus?

You could go on a trial gluten free for a month. Be vigilent, beware of cross contamination or you will not truly know if going gluten-free helps you. However if you want to get the blood test 1st (celiac panel) and I recommend that you do, do not start ur gluten-free trial until after the blood tests results. Even if its negative a gluten-free diet may help you. If Dr. tries to dissuade you (& many do) stand firm & insist you have a celiac panel. If your blood tests are positive you will have to decide if you want to do an endoscopy. If you do you'll have to continue eating gluten until it is done for a better chance of getting a positive result. Some ppl decide not to scope & just go gluten-free regardless & that's fine too.

Hope you feel better!

researchmomma Contributor
researchmomma
Posted

hysterectomies are the #1 unnecessary operation in the US. What are ur symptoms concerning your uterus?

You could go on a trial gluten free for a month. Be vigilent, beware of cross contamination or you will not truly know if going gluten-free helps you. However if you want to get the blood test 1st (celiac panel) and I recommend that you do, do not start ur gluten-free trial until after the blood tests results. Even if its negative a gluten-free diet may help you. If Dr. tries to dissuade you (& many do) stand firm & insist you have a celiac panel. If your blood tests are positive you will have to decide if you want to do an endoscopy. If you do you'll have to continue eating gluten until it is done for a better chance of getting a positive result. Some ppl decide not to scope & just go gluten-free regardless & that's fine too.

Hope you feel better!

I have to agree with this. I hate to pry but why are you having this? Is it a total hysto? I have Stage IV endometriosis and my doc did an ablation (which is off label use for endometriosis) and it really helped. The other thing recommended for endometriosis is a gluten free diet. Hmmm, how coincidental!

  • 1 month later...
Harlygirl Newbie
Harlygirl
Posted
  • Author

I have to agree with this. I hate to pry but why are you having this? Is it a total hysto? I have Stage IV endometriosis and my doc did an ablation (which is off label use for endometriosis) and it really helped. The other thing recommended for endometriosis is a gluten free diet. Hmmm, how coincidental!

I want to let all of you know how much it means to me to get your feedback. Even though I have been sent to what I was told to be the "VERY BEST HOSPITAL" and doctors. I still feel confused, and alone. Not one doctor has given me any hard facts on anything. I know there is a bit of trail and air. After all it is the practice of medicine! I feel like I've done every test and took every pill under the sun. I was even treated for giardia!

As for the hysto. It been 2 weeks since the surgery. Trust me you are so not prying. I had nothing wrong. No abnormal paps, excessive bleeding, nothing. They said it was probably hormones causing the attacks????? OK. I though I'm desperate. Let's try. I'm not having any more children so I thought what could it harm. I hope I'm not taking that statement back a few years down the road! But I've had 2 attacks this week. 1 two days ago and another started at about 1 am this morning. So I'm not fixed. :( I had no idea that a gluten free diet was recommended for endometriosis! Wow.

My plan is to go back to the hospital that found the markers. They told me that they were going to do blood work and a specimen sample for celiacs, but they never told me the results of these tests. I will ask for the panel or get the results of the one that was done. They were trying soooooo many different things on me, I did get confused. They even had me to drink a wheat based stool softener 3 to 4 times a day! <_<

I just want to thank everyone again for the advice. I know now I'm not the only one and there are people who care and want to help. Thanks so so much.

Harlygirl Newbie
Harlygirl
Posted
  • Author

I've not had any of my organs taken out. I'm sorry, I can't help you there. Hopefully, they'll let you keep what you have left.

As for the markers, that is a genetic term used to refer to alleles. You tested positive for having either of the 2 common Celiac genes (DQ2 or DQ8). This does not mean you have Celiac, by itself. Having these genes is required to be diagnosed with Celiac and it also predisposes you to either acquiring it or already having it. Being positive for the Celiac markers does give you a good chance of having it, and so with a positive markers test and other positive bloodwork/endoscopy, you could be a Celiac.

Thanks for explaining this to me. Why couldn't they just have explained it this way to begin with! I've had the bloodwork. But they were trying so many different things I never got the results. Now I'm going to find out! Thanks so much!

UKGail Rookie
UKGail
Posted

Please also be aware that sometimes the blood tests for celiac antibodies are negative, but your symptoms could still be caused by gluten intolerance. With your symptoms, and with a genetic predisposition, and as they seem to have ruled out lots of other possible causes of your problems, you could insist on an endoscopy even if your blood test for antibodies is negative. As with the blood tests, you still have to be eating gluten to give yourself a good chance of a positive biopsy. Finally, if both these tests come back negative, then proceed to trial a strict gluten fee diet, being careful about possible cross contamination, as suggested above.

My symptoms were quite like yours. I did not manage to get a positive diagnosis from the medical community despite trying, but most of my symptoms cleared up quite quickly after going gluten free. In particular the nagging lower abdominal pain which had been variously diagnosed as appendicitis (yes, I also lost that organ), constipation and ovarian cysts, cleared up completely, for the first time in over 25 years.

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

Celiac.com Sponsor (A8-M):


Bubba's Mom Enthusiast
Bubba's Mom
Posted

Hi everyone, I found this forum while doing some research today about celiac disease. I was told told that I had "markers" for the disease. I have no idea what they meant by that. And even after asking the docs they really didn't explain themselves all that well. Sorry, I'm getting ahead of myself. I have always seemed to have some kind of health problem. Severe migraine, acid reflux, and stomach pain due to anxiety from the age of 7. To bring you up to present, for the past 5 years out of the blue I would get violently ill. Nausea, vomiting,and at the end of the attack diarrhea. Before the attack happens I get the worst gassy egg taste in my mouth. It lasts though out the attack as well. I always know when I'm going to get sick just because of this horrible taste! Has anyone had this happen? The docs Have tested and re-tested for everything. I've been treated for the Giardia parasite. Then I was told I was chronically constipated. And to drink a laxative mixed in water 3 times a day. Still nothing. :( The next step was my gallbladder was taken out, then my appendix. I had an attack just a few days ago. So it was not my appendix. I'm scheduled for a hysterectomy in march. I'm not sure what will happen after. But one thing I do know that I am scared to eat anything other than a brand of beans that I know to be safe. Can anyone give me some advice on where to begin? It would be greatly appreciated.

So many of your symptoms could be Celiac!

You absolutely should follow up with info on the testing.

Just the fact that you had GB disease is very telling. It's VERY common in Celiac disease.

Here's a link for you.

https://www.celiac.com/articles/119/1/Gall-Bladder-Disease-and-Celiac-Disease---By-Ronald-Hoggan/Page1.html

Skylark Collaborator
Skylark
Posted

Do you need help getting going on the diet? I really agree that you should go gluten-free before you consider a hysterectomy. I can't fathom why doctors want to remove your female bits for a GI problem.

Gluten-free makes sense but have you been tested for SIBO? That could explain the rotten-egg taste. I'd suggest as well as going gluten-free, you go onto either the GAPS diet Open Original Shared Link or the Specific Carbohydrate Diet (SCD) Open Original Shared Link They are close-cousins and you can do whichever sounds better. They are designed to balance the bacteria in your intestines better and often help with chronic constipation and IBS.

Fresh fruits, veggies, unseasoned meat you cook yourself, dry beans, rice, and potatoes are all naturally gluten-free. (You won't eat rice or potatoes on SCD.) Plain herbs and spices are fine to use, but many commercial seasoning mixes contain flour. Most dairy is too, but some celiacs don't tolerate it very well so you may want to try eliminating it. You need to be strict to get the benefits of the diet. You'll have to get toaster bags to keep crumbs off your gluten-free bread, get a fresh cutting board since gluten can hide in the scratches, and scrub your kitchen until it gleams and get rid of all those hidden breadcrumbs.

If you go to Open Original Shared Link there are safe and unsafe lists and some info on getting started on the diet linked from the main page. :)

WynPeters Newbie
WynPeters
Posted

I too was given a total hysterectomy about 15 years ago and it did not solve the symptoms I was having. They also thought my symptoms were being caused by hormones, come to find out it was never those parts causing the hotmonal issues, it was my thyroid. I am just now learning about Celiac and just recently tested positive through bloodwork and will be having my endoscopy next month. I wish you the best of luck.

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. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

      This article does not address migraines at all. Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines...
    2. knitty kitty
      - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

      Excessive dietary tyrosine can cause problems. Everything in moderation. Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese. Sulfites cause a high histamine release. High histamine levels are found in migraine. Following a low histamine diet like the low histamine Autoimmune Protocol diet,...
    3. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit.
    4. Scott Adams
      - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."
    5. Scott Adams
      - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,158
    • Most Online (within 30 mins)
      7,748
    MollyK
    Newest Member
    MollyK
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
    • knitty kitty
      Headaches / Migraines and Hypoglycaemia

      By knitty kitty · Posted

      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      KAN-101 Treatment for Coeliac Disease

      By Scott Adams · Posted

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Body dysmorphia experience

      By Scott Adams · Posted

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
×
×
  • 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.