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

Levsin fears and other issues


Elizabeth Z

Recommended Posts

Elizabeth Z Newbie

I am a 21 year old female and I was diagnosed with celiac when I was 17. I am pretty strict about my diet, with a few slip ups here and there. However, I have begun experiencing a lot of issues in the last year. I have been more bloated and constipated more than I have ever been. Not sure if this is too much, but its begun cutting into my sex life, making intercourse very painful the majority of the time. There have been many times where my boyfriend has wanted to take me to the hospital for it. I have seen my gynecologist and he has cleared me on his end, but my gastroenterologist will not listen when I say that I know this has something to do with my stomach issues. On top of the bloating and the issues coming with it, I have been experiencing heartburn and acid reflux everyday. This begun in the last six months. My gastroenterologist has prescribed me levsin, but reading the side effects of it and the interactions, I am worried it is only going to make things worse. In addition to this, my doctor told me to just "consult Google" for most of my other issues. I am feeling very lost and I don't know where else to turn.


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



Celiac.com Sponsor (A8-M):



trents Grand Master

It seems like levsin would produce the opposite effect of what you want to happen if you are constipated.

Are you still consuming dairy?

juniper2 Newbie

I have been gluten free for nearly 20 years. And in the last 7 I've also had to cut out certain alliums (garlic / onions) as they cause acid reflux. I've also experienced severe gas from high fibre veg and legumes, this so severe that I nearly thought it would kill me a few times :(

I cannot have ancient grains: teff, millet or quinoa or spinach. and definitely not alfalfa. I also need to steer clear of cover crops like rapeseed oil. Micro-doses at 20ppm which are 'deemed' safe by law are not safe at all for someone like me. I feel incredibly unprotected. But the science needs to catch up. 

Full fat grass fed milks are not a problem unless I've had even a micro-dose of gluten or high fibre veg/legumes.

Elizabeth Z Newbie
14 hours ago, trents said:

It seems like levsin would produce the opposite effect of what you want to happen if you are constipated.

Are you still consuming dairy?

I haven't started levsin just yet. My doctor prescribed the name brand and it was $265 WITH insurance. I was reading the uses for it and I thought it sounded like the complete opposite of what I needed. I just cut out most dairy, although it's so hard to take it out of my coffee. I'm trying to experiment with other kinds of milk. I've had a lot of different plant-based milks and I'm just not a fan.

Scott Adams Grand Master

Have you tried pre- and pro-biotics? I had similar stomach/bloating issues and these helped me a lot, but took about 2 weeks to start working:

https://www.amazon.com/gp/product/B08NSXBYVV/

AlwaysLearning Collaborator

Things that cross my mind reading your post:

• I would get tested for vitamin deficiencies. If you are taking any supplements, make sure they aren't causing the abdominal pain. (Iron supplements are quite painful for me.)
• Working on improving gut biome seems smart.
• Add more fruits and vegetables to your diet, fiber to help with constipation.
• Make sure that most of the beverages you drink are water and that you're drinking the right amount for your size.
• Get your hormone levels tested to rule out a hormone imbalance as a possible cause for vaginal pain. But also, don't overlook things like UTIs that could flare and fade.
• Make sure your boyfriend is avoiding gluten before you start making out and does the correct tooth brushing/mouth wash routine if he has had some in the past few hours.
• Check all of your products for hidden sources of gluten. Shampoo, conditioner, makeup, lotion, even plastics like dental retainers or bite plates can contain gluten.
• Exercise regularly. Walking helps with digestion, keeping things moving, and reduces stress hormones in your system.
• Keep a food/symptom diary to try to pinpoint possible culprits, or rule out suspects. 
• Did your doctor check you for hernia?

I guess all of this advice is basically saying to live as healthy a lifestyle as you can, but I know that this is all pretty basic, common sense, and nothing you don't already know. Its more just a reminder to make sure you're considering the most common causes so that you can rule them out.

But I think the most important thing is to keep looking for answers until you find them. I am really sorry that your doctor is basically writing you off. But maybe it is better to have one who can admit that he can't help? If nothing else, you know to find a new doc.

I don't know what Levsin is but it sounds like a cop out to me. 

Best of luck to you! I hope you feel better soon.
 

Wheatwacked Veteran

Your symptoms remind me of those my wife had. She was diagnosed with endometriosis in her mid twenties.  My wife was a nurse, but it took finding the top specialist in our region to finally diagnose.  That was in 1976.  Also, you should get screened for ovarian cancer. Like Celiac Disease, doctors seem to be in denial and the symptoms are often vague and elusive like yours.  Levsin reduces stomach acid which will interfere with nutrient absorption which will make you worse, not better. (personal opinion).  10 to 1 odds you are vitamin D deficient along with others.

"Symptoms of ovarian cancer can also be caused by other, less serious conditions...high levels of CA-125 is more often caused by common conditions such as endometriosis and pelvic inflammatory disease."      https://www.cancer.org/cancer/ovarian-cancer/detection-diagnosis-staging/detection.html

14 hours ago, AlwaysLearning said:

I would get tested for vitamin deficiencies....I don't know what Levsin is but it sounds like a cop out to me. 

Amen.

 


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



Celiac.com Sponsor (A8-M):



Khmw Newbie
On 10/12/2021 at 8:32 AM, Elizabeth Z said:

I haven't started levsin just yet. My doctor prescribed the name brand and it was $265 WITH insurance. I was reading the uses for it and I thought it sounded like the complete opposite of what I needed. I just cut out most dairy, although it's so hard to take it out of my coffee. I'm trying to experiment with other kinds of milk. I've had a lot of different plant-based milks and I'm just not a fan.

Hi im Kathy, my daughter has celiacs among other things as well, we have found that the silk brand dairy free almond coffee creamer is pretty good. The almond milk we don't so much like but this creamer is pretty tasty so just a suggestion if you havnt tried it already. Also, she gets bloated occasionally even being complete gluten-free. She's now being sent to a rheumatologist and an encronologist to be tested for other auto immune diseases such as Hoshimotos and Graves disease. Hope this helps a little hope you feel better 💗

Wheatwacked Veteran
27 minutes ago, Khmw said:

Hoshimotos and Graves disease.

Quote

There were more cases of overt hypothyroidism in mild than in moderate iodine deficiency caused by a 53% higher incidence of spontaneous (presumably autoimmune) hypothyroidism. On the other hand, there were 49% more cases of overt hyperthyroidism in the area with moderate iodine deficiency.   The Danish investigation on iodine intake and thyroid disease   https://pubmed.ncbi.nlm.nih.gov/16868134/

Guide: How to Assess Iodine Deficiency   https://www.zrtlab.com/blog/archive/how-to-assess-iodine-deficiency/

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,509
    • Most Online (within 30 mins)
      7,748

    Mr-Collateral531
    Newest Member
    Mr-Collateral531
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.2k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Yes, I would think that for the 10% of celiacs who can't tolerate oats it would cause villous atrophy just like gluten. No, it would not produce marsh 3b villous atrophy in a couple of days. Nothing will produce measurable villous atrophy that fast. It takes at least two weeks of at least 10g of gluten consumption daily (10g is the amount found in about 4-6 slices of wheat bread) to develop measurable villous atrophy and even then probably not 3b villous atrophy. Are you asking these questions in because you are considering taking on a gluten challenge?
    • Matt13
      Thanks for the awnsers i understand there is maybe system reaction but do they create or cause villious atrophy? And igmf you it them for example a couple of days di they instantly induce marsh 3b?
    • robingfellow
      My gallbladder was at 94% ejection fraction according to my HIDA scan before surgery, when the "normal" range is considered to be between 30-80%, so the surgeon recommended removal because I had been experiencing severe chronic upper quadrant pain and even vomiting despite having a strong stomach. A biopsy after surgery showed intense inflammation suggesting my gallbladder was on the verge of bursting if I hadn't gotten it removed.   The last time my iron and vitamin d levels were checked post-gluten free diet they were in a normal range (I take 60mg iron tablets every other day, and vitamin D capsules daily) I do also take magnesium daily, specifically 400mg magnesium bisglycinate at night to aid my sleep since I try to avoid taking melatonin due to personal preference.   I'll definitely have to keep in mind the point about celiac possibly causing gallbladder problems, I'll probably wait until I can see a proper GI and get their input before I attempt to reintroduce gluten back into my diet that way any reaction I may or may not have can be properly assessed.
    • Mr-Collateral531
      I have dealt with gallbladder issues on-and-off for about ten years now. I was diagnosed with biliary dyskinesia in 2016 but chose to keep my gallbladder. Then in July 2022, I was diagnosed with celiac disease. Your surgeon is partially right in that your gallbladder can definitely cause some of those issues. However, the flip side to the coin is celiac can cause issues with your gallbladder. It’s a lesser studied area of disease manifestation, but limited research has shown a correlation between celiac, gallbladder dismotility, and how a gluten-free diet can help increase the gallbladder ejection fraction. Which literally happened in my case. In 2016 my HIDA scan measured my gallbladder ejection fraction as 29%. Then in 2023 after going strict gluten free, my HIDA scan measured it as 100%. It’s not perfect. I get right upper quadrant pain from time to time still. But at least I got that piece of evidence for myself.  I haven’t found any empirical studies on it but I have a theory. The gallbladder stores your bile for digestion. When the food enters your small intestine, the cells of your duodenum secrete cholecystokinin (CCK). CCK is what tells your gallbladder to empty. It’s literally Greek for “bile sac move.” Since the duodenum is a prime location for epithelial cell damage in celiac, it seems very possible that this can alter production of digestive hormones like CCK. As the small intestine begins to heal it produces more CCK and therefore the gallbladder can once again function. If you care to share, why did you need to have yours removed? In regards to the low iron and low vitamin D despite supplementation, that is also common in celiac. I fought vitamin D deficiency for almost a year despite taking 5000 IUs a day. I don’t have anemia, but I know I can use more iron based on my last round of blood work. Best I can say is you need to right cofactors as well. My vitamin D level virtually stayed the same for three different blood tests all 12 weeks apart. One was even after taking the prescription vitamin D of 50,000 IUs once a week. Once again, something not all doctors seem to know, but a nutrient deficiency isn’t necessarily treated by just taking more of that nutrient. Vitamin D metabolism requires many cofactors and processes in the small intestine, liver, and kidneys. And iron metabolism requires many cofactors as well including vitamin D. The biggest thing is to find a supplement regiment that works for you. Do you take specific vitamins or do you take a multivitamin? How much iron is in the supplement you take? What type of iron is it? Do you take magnesium? Another big game changer for me was adding 450mg/day of magnesium supplements for about two months and then dropping to 200mg/day. I would take 250mg of magnesium aspartate at lunch time and then 200mg of magnesium glycinate around 7:00pm. Magnesium is a huge cofactor for both vit D and iron metabolism. And that’s just one. Zinc, copper, vitamin K, boron, vitamin B6, folate, vitamin B12, and vitamin C are all contributing cofactors to vitamin D and iron metabolism. But too much supplementing is also dangerous. I’ve also been through iron overload and zinc toxicity in my post-celiac journey. Once again, doctors just saying to do one thing without considering anything else. I hope this helps and if you have any more questions don’t hesitate to ask.          
    • trents
      Your doctor may or may not be well-informed about the issue you raise so I would not agree that he/she would necessarily be the best person to rely on for a good answer. The question actually raises two issues.  The first issue has to do with cross contamination and individual sensitivity as dublin55 alluded to. Oats and wheat are both cereal grains that are typically grown in the same areas, transported in the same trucks, stored in the same silos and processed on the same equipment. So, there is usually significant CC (Cross Contamination). With gluten free oats, there is some effort to separate these processes that would otherwise cause significant CC and "gluten free" oats should meet the FDA requirement of not exceeding 20 ppm of gluten. But this 22 ppm standard is not strict enough for more sensitive celiacs. "Certified gluten free" oats (and other food products are held to a stricter standard, that being not exceeding 10 ppm. But even that is too much gluten for some super sensitive celiacs and will cause a reaction. The second issue with oats has nothing to do with gluten per se but with the protein found in oats called "avenin". Avenin has a structure similar enough to gluten to cause a reaction in some celiacs. This is called "cross reaction" not to be confused with "cross contamination" discussed in the previous paragraph. So, for whatever reason, whether cross contamination or cross reaction, it is estimated that about 10% of celiacs react to oats.
×
×
  • Create New...