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

Should I See A Doctor?


GlutenWrangler

Recommended Posts

GlutenWrangler Contributor

I was diagnosed 7 months ago with celiac disease, and have made significant progress. The thing is that I don't know if I should get more help from a doctor. My last gastroenterologist was an idiot, and I stopped seeing him a long time ago. So I haven't had a gastroenterologist since being diagnosed. I read that some of the things that can prevent healing are bacterial overgrowth and pancreatic insufficiency. I know that I have a bacterial overgrowth problem, and I am treating it with very strong probiotics. I just don't know if it is worth seeing a doctor to see if everything else is ok. Have most of you done your healing on your own, or did you end up needing assistance from a doctor? Thanks for your help.

-Brian


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

How do you feel? Are you making progress in your healing? It is really impossible for us to make that call. If you are feeling bad, and think that something else might be wrong, then a doctor might be able to help you (and I say might, as there is no guarantee). On the other hand, if you feel like you are getting better on your own, why bother with doctors?

Anyway, that is just my opinion. I hope you're doing okay.

Jestgar Rising Star

I decided that whatever was wrong with my body would heal on its own and I prefer to wait it out rather than risk upsetting the balance by adding supplements or herbs or even probiotics. The only things I do take are vitamins and glucosamine/chondroitin/MSM (thanks Carla!) 2 or 3 times a week. Even these I'm cautious with. I think the human body is amazing and resilient and delicate and given the chance, once the damaging substances are removed, will heal on its own.

elye Community Regular

Boy, this is a tough one. I always want to put great faith in our own bodies and the messages they give us as to how we're feeling, but mine certainly hasn't told me about some crucial things that fortunately were discovered almost by accident, and by my great family doctor. I had no symptoms, gastrointestinal or otherwise, of gluten intolerance, with the exception of borderline low iron. My doctor decided to pursue things and, miraculously in our world of docs being out to lunch, sent me for the celiac blood panel. I was shocked by the positive result, and more so by the damaged villi shown on my endoscope. I also was diagnosed a year later with hypothyroid, again with no symptoms. I think my body just needs to pay more attention! Or I simply need a reset button... :rolleyes:

Jestgar Rising Star

Elye, do you feel different now that you aren't eating gluten?

GlutenWrangler Contributor

I don't feel great, but I have made a lot of progress. No more severe stomach pain, bad dehydration, severe diarrhea or insomnia. But I was thinking that 7 months would show a major improvement in my overall health. I know it can take years to fully heal, but I'm only 22, so I figured I would heal a little faster. I still have loose stools and sometimes diarrhea. I still need about 3 gallons of liquid a day to stay well hydrated. And I'm still not near as functional as I need to be. When I got celiac disease, it ravaged my body in a very short period of time. I had to stop going to college over two years ago. I was diagnosed in June of 2006, and figured I would be close to normal again by September of 2007, when I plan to go back to finish my degree. At this rate, I don't know how much better I will be by then. I don't think there is anything else wrong with me related to celiac disease that I would need to see a doctor for. But since I don't know everyone's story, I'm not sure if I'm at a normal point after 7 months. I'm taking L-Glutamine and Probiotics to speed the healing along, but at this point it seems like the necessity for so much water and the diarrhea will never go away. Based on your experience, do you think I'm healing at a normal rate? Thanks,

-Brian

elye Community Regular
Elye, do you feel different now that you aren't eating gluten?

It's funny...as I mentioned, I didn't have any classic symptoms before being diagnosed, and I really have always felt well. So no, I don't really feel any different...I'm still feeling well. However, I now DO react when I get glutened! I have the abdominal cramping, the bloating, the diahrrea...NOW I know what everybody was talking about! Makes sense, I guess--my lower intestine has healed and now when it reacts to the invading gluten, I can feel it!

Brian, have you thought about other food intolerances? Unfortunately, it is not uncommon for a celiac to go gluten-free and suddenly become sensitive to other foods, casein being a big one.


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



Celiac.com Sponsor (A8-M):



TestyTommy Rookie

I've been gluten-free about 10 months, and I've also been a little disappointed in my recovery. On the other hand, I feel WAY better than I did a year ago, so that's a positive thing. In my case, I was undiagnosed for at least 8 years, so I figure it will take me longer to heal than fpr people who were diagnosed more quickly. My belly feels much better, but I still have trouble sleeping, drink an awful lot of water, and feel generally tired.

I've definitely developed other food allergies. I've eliminatd eggs, dairy, soy and nuts --- all things I used to eat frequently

It's hard to be patient while healing. And it's not like there's any way to objectively measure the process, either. I mean, if you hurt your back, you can say "Oh, this month I can lift 10 more pounds than last month." With us, we can just feel 'better' or 'not better'. And, if you're like me, you have some days that pretty good and some that are pretty bad. It's a general improvement, not a steady improvement.

GlutenWrangler Contributor

I can't stand the need for so much water. Not only that, but the water has to be fresh poland spring water. The date on the bottle can't be more than a month old. It's hard enough just to get the water, never mind drinking 3 gallons of it. Granted, I have improived, but the need for so much water has not changed. Does this go away?

tarnalberry Community Regular
I can't stand the need for so much water. Not only that, but the water has to be fresh poland spring water. The date on the bottle can't be more than a month old. It's hard enough just to get the water, never mind drinking 3 gallons of it. Granted, I have improived, but the need for so much water has not changed. Does this go away?

The body adapts to how much water it needs - people who drink that much regularly find that they need that much, but people who drink 1/10th that (less than 5 cups a day) may not be dehydrated either. You *may* find that you can slowly wean yourself off that much water (if you're not doing activities that cause you to sweat out lots of water or have a condition, like untreated diabetes, that causes frequent urination).

DVK Apprentice

I hear ya on the Water issue I used to drink maybe 2 gallons a day and then have a dry throat and night if I wasnt drinking water constantly. I have not been officially diagnosed, But gluen free for 1 month and Positve Enterolab Results. Now I have been gluten-free I have to remind myself to drink water, I drink maybe 4 bottles of water and a cup or 2 a night.

TestyTommy Rookie

Brian,

Make sure you are getting enough electrolytes, especially salt. If your electrolytes get out of whack (as they did for me), drinking water will actually make you thirstier. The reason is that the water doesn't get into your cells, because it needs the electrolytes to get through the cell membranes. The more you drink, the more dilute your blood electrolytes get, and the harder it is for the water to get into the cells. (I ended up in the hospital because of this about 3 years ago).

Gatorade helps, but it has a lot of sugar. I've been using a product called 'Endurolytes' by Hammer Nutrition, and it's helped reduce my need for water quite a bit. It's about $15.00 for 120 capsules, which is equivalent to about 30 quarts of Gatorade, so it's also cheaper. The casules are mostly salt, but also include other electrolytes (Ca, Mg, K). Endurolytes are designed for long-distance runners to take with water when they're racing/training.

Tommy

GlutenWrangler Contributor

Tommy,

I definitely make sure to get my electrolytes, especially since overhydration can be deadly. My total liquid for the day looks like this:

15 24oz bottles of water

4 Gatorades

2 Pepsi 12oz cans

Tiffany,

So what your saying is that I may have needed this much fluid before, but I don't need that much now, but my body thinks it needs it? That's interesting. I've never thought about it that way. Maybe I could try weaning off slowly. It's kind of like, how would I ever know how much I really need if I always drink the same amount. Good point. Thanks.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,163
    • Most Online (within 30 mins)
      7,748

    Estee
    Newest Member
    Estee
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...