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

I Could Really Use Some Opinions, Please?


Alex33

Recommended Posts

Alex33 Newbie

A couple years ago I went to a GI doctor and was diagnosed with IBS with virtually no testing. She did some blood work, but to my knowedge did not test for celiac. I can't say I agree that it's just IBS. I have not gotten any relief from meds, diet changes, and I am not under stress.

Initially I went to the doctor because I was having daily diarrhea. (Not too many times in a single day, but it was still daily) Now I seem to go back and forth between constipation and occassional loose stools. But I would say more constipation as of lately. The thing is, even when my stool is normal formed, I still get a lot of pain before, during, and/or after I go to the bathroom.

As for my abdominal pain, I get cramping sometimes (not daily, but when I get it, its very painful!) I have an overall uncomfortable feeling in my abdomen. Like there's a lot of pressure or a tightness. (I feel this daily. I have not had one day where I haven't had discomfort, and that isn't characteristic of IBS MOST of the time..) I also feel this odd feeling that my ribs on my left side are bumping into something. (Hard to explain!)

I will list other symptoms that I have experienced at one point or another:

-Frequent headaches

-I am often dizzy despite my iron levels being normal

-Chronically chapped lips, does not matter what I put on them!

-For a while last year I went through weeks of just overall 'feeling out of it"

-I have a rash on my abdomen that comes and goes. It doesn't itch but it feels kind of prickly at times. It's red/pink and not raised. It has been coming and going for months now.

-I have never been able to gain weight. I am very underweight for my size

-For as long as I can remember I have always had horrible teeth in the way of weak enamel requiring a lot of cavities to be filled)

-and the digestive problems I explained (these started out of no where!)

Opinions and suggestions would be greatly appreciated. I currently am uninsured at the moment and not able to go to the doctor.


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



Celiac.com Sponsor (A8-M):



daphniela Explorer

Those symptoms sound like Celiac. I also would think you are dehydrated. That can cause dizzy spells and chaped lips. You should drink more water. Dizzy spells can also be a symptom of hypoglycemia. But I am more likely to think it is dehydration since you have diarrhea daily.

Since you have no insurance to see a doctor, you could try the gluten free diet for a few months and see if that helps. Also look into some free clinic in your area and ask for the celiac panel. Do this first before trying to go gluten free or you will get a false negative.

tarnalberry Community Regular

If you can't go to the doctor (and you don't have to have insurance, you can even find a sliding scale clinic), then the only thing you can do with respect to testing food intolerances is to try eliminating the suspects.

If you think you could be gluten intolerant (and your symptoms do indeed overlap), then you can try going *COMPLETELY* gluten free (knowing, however, this includes new pans (if non-stick), new cutting boards, new colander, new toaster, and either a gluten-free household or careful control of contamination. Foods can be a bit more expensive, but this can be minimized by eating whole, naturally gluten free foods (fruits, veggies, meat, eggs, dairy, seeds/nuts, legume, and gluten-free grains like rice, millet, quinoa).

You would need to stick to the gluten free diet (NO cheating, no contamination) for two to three months to get a reasonable idea if this is the problem.

Despite the fact I'm probably making it sound hard, given what you've said, it's probably well worth the effort to give it a try, and is totally doable. Know, however, that if it resolves things, and you later want to get diagnosed, you would have to resume eating gluten for at least two to three months, in order to get a positive test. Tests are invalid if you've gone gluten free.

Alex33 Newbie
Those symptoms sound like Celiac. I also would think you are dehydrated. That can cause dizzy spells and chaped lips. You should drink more water. Dizzy spells can also be a symptom of hypoglycemia. But I am more likely to think it is dehydration since you have diarrhea daily.

Since you have no insurance to see a doctor, you could try the gluten free diet for a few months and see if that helps. Also look into some free clinic in your area and ask for the celiac panel. Do this first before trying to go gluten free or you will get a false negative.

I appreciate your input.

I try and consume a lot of water, but probably don't get enough. I'm currently not having daily diarrhea right now, more towards constipation the past couple of months.

Thanks

Alex33 Newbie
If you can't go to the doctor (and you don't have to have insurance, you can even find a sliding scale clinic), then the only thing you can do with respect to testing food intolerances is to try eliminating the suspects.

If you think you could be gluten intolerant (and your symptoms do indeed overlap), then you can try going *COMPLETELY* gluten free (knowing, however, this includes new pans (if non-stick), new cutting boards, new colander, new toaster, and either a gluten-free household or careful control of contamination. Foods can be a bit more expensive, but this can be minimized by eating whole, naturally gluten free foods (fruits, veggies, meat, eggs, dairy, seeds/nuts, legume, and gluten-free grains like rice, millet, quinoa).

You would need to stick to the gluten free diet (NO cheating, no contamination) for two to three months to get a reasonable idea if this is the problem.

Despite the fact I'm probably making it sound hard, given what you've said, it's probably well worth the effort to give it a try, and is totally doable. Know, however, that if it resolves things, and you later want to get diagnosed, you would have to resume eating gluten for at least two to three months, in order to get a positive test. Tests are invalid if you've gone gluten free.

Thanks for your descriptive input. Very helpful. So, if I decide to try a gluten free diet, I should continue it for 2-3 months? Is that how long it typically takes to see real improvement?

The Fluffy Assassin Enthusiast
A couple years ago I went to a GI doctor and was diagnosed with IBS with virtually no testing. She did some blood work, but to my knowedge did not test for celiac. I can't say I agree that it's just IBS. I have not gotten any relief from meds, diet changes, and I am not under stress.

Initially I went to the doctor because I was having daily diarrhea. (Not too many times in a single day, but it was still daily) Now I seem to go back and forth between constipation and occassional loose stools. But I would say more constipation as of lately. The thing is, even when my stool is normal formed, I still get a lot of pain before, during, and/or after I go to the bathroom.

As for my abdominal pain, I get cramping sometimes (not daily, but when I get it, its very painful!) I have an overall uncomfortable feeling in my abdomen. Like there's a lot of pressure or a tightness. (I feel this daily. I have not had one day where I haven't had discomfort, and that isn't characteristic of IBS MOST of the time..) I also feel this odd feeling that my ribs on my left side are bumping into something. (Hard to explain!)

I will list other symptoms that I have experienced at one point or another:

-Frequent headaches

-I am often dizzy despite my iron levels being normal

-Chronically chapped lips, does not matter what I put on them!

-For a while last year I went through weeks of just overall 'feeling out of it"

-I have a rash on my abdomen that comes and goes. It doesn't itch but it feels kind of prickly at times. It's red/pink and not raised. It has been coming and going for months now.

-I have never been able to gain weight. I am very underweight for my size

-For as long as I can remember I have always had horrible teeth in the way of weak enamel requiring a lot of cavities to be filled)

-and the digestive problems I explained (these started out of no where!)

Opinions and suggestions would be greatly appreciated. I currently am uninsured at the moment and not able to go to the doctor.

Chronically chapped lips usually result from too little vitamin B2 Open Original Shared Link or B6 Open Original Shared Link. It could also be an overdose of vitamin A Open Original Shared Link but presumably you'd know about if if you were doing that. Usually people with celiac disease suffer from B12 deficiency (as well as magnesium, calcium and others); B2 and B6 are also possible I guess, but might indicate another food intolerance or a different malabsorption problem.

I'm with the other people who replied in thinking it sounds like it might be celiac disease, and that you'd probably benefit from going gluten free. If you can't go to a doctor, trying out the diet is probably your best recourse. As to how quickly you might respond, it varies. I responded almost immediately; others not so much. If you have other intolerances or other autoimmune triggers (such as gluten in celiac disease) or if you have food allergies, you'll have to track those down, too. A food diary is helpful for such efforts.

Good luck, and welcome to the board!

Alex33 Newbie
Chronically chapped lips usually result from too little vitamin B2 Open Original Shared Link or B6 Open Original Shared Link. It could also be an overdose of vitamin A Open Original Shared Link but presumably you'd know about if if you were doing that. Usually people with celiac disease suffer from B12 deficiency (as well as magnesium, calcium and others); B2 and B6 are also possible I guess, but might indicate another food intolerance or a different malabsorption problem.

I'm with the other people who replied in thinking it sounds like it might be celiac disease, and that you'd probably benefit from going gluten free. If you can't go to a doctor, trying out the diet is probably your best recourse. As to how quickly you might respond, it varies. I responded almost immediately; others not so much. If you have other intolerances or other autoimmune triggers (such as gluten in celiac disease) or if you have food allergies, you'll have to track those down, too. A food diary is helpful for such efforts.

Good luck, and welcome to the board!

Since I don't have the chance to get tested right now, sounds like a strict gluten free diet sounds like the best idea. This board is very helpful and understanding. I appreciate it.


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,339
    • Most Online (within 30 mins)
      7,748

    Skydawg
    Newest Member
    Skydawg
    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

    • trents
      My reaction to a gluten bolus exposure is similar to yours, with 2-3 hours of severe abdominal cramps and intractable emesis followed by several hours of diarrhea. I don't necessarily equate that one large exposure to gluten with significant intestinal lining damage, however. I think it's just a violent reaction to a what the body perceives to be a somewhat toxic substance that I am no longer tolerant of because I have quit exposing myself to it regularly. It's just the body purging itself of it rather than an expression of significant damage. Before diagnosis, when I was consuming gluten daily, I had little to no GI distress. I was, for the most part, a "silent celiac". The damage to my small bowel lining didn't happen all at once but was slow and insidious, accumulating over a period of years. The last time I got a big shot of gluten was about three years ago when I got my wife's wheat biscuits mixed up with my gluten-free ones. There was this acute reaction after about two hours of ingestion as I described above. I felt washed out for a few days and fully recovered within a week or so.  Now, I'm a 74-year-old male. So, I'm not worried about being pregnant. And I don't want to contradict your physicians advice. But I just don't think you have done significant damage to your small bowel lining by one episode of significant gluten ingestion. I just don't think it works that way.
    • Skydawg
      Wondering about some thoughts on how long to wait to try to get pregnant after a gluten exposure?  I have been diagnosed for 10 years and have followed the diet strictly. I have been cross contaminated before, but have never had a full on gluten exposure. I went to a restaurant recently, and the waiter messed up and gave me regular bread and told me it was gluten free. 2 hours later I was throwing up for the whole evening. I have never had that kind of reaction before as I have never had such a big exposure. My husband and I were planning to start trying to get pregnant this month. My dr did blood work to check for electrolytes and white blood cells, but did not do a full nutritional panel. Most of my GI symptoms have resolved in the past 2 weeks, but I am definitely still dealing with brain fog, fatigue and headaches. My dr has recommended I wait 3 months before I start to try to get pregnant.   I have read else where about how long it can take for the intestine to fully heal, and the impacts gluten exposure can have on pregnancy. I guess I am really wondering if anyone has had a similar experience? How long does it take to heal after 1 exposure like that, after following the diet so well for 10 years? Is 3 months an okay amount of time to wait? Is there anything I can do in the meantime to reduce my symptoms? 
    • ShadowLoom
      I’ve used tinctures and made my own edibles with gluten-free ingredients to stay safe. Dispensary staff don’t always know about gluten, so I double-check labels or just make my own.
    • Scott Adams
      It's great to hear that there are some good doctors out there, and this is an example of why having a formal diagnosis can definitely be helpful.
    • RMJ
      Update: I have a wonderful new gastroenterologist. She wants to be sure there’s nothing more serious, like refractory celiac, going on. She ordered various tests including some micronutrient tests that no one has ever ordered before.  I’m deficient in folate and zinc and starting supplements for both. I’m so glad I decided to go to a new GI!
×
×
  • Create New...