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

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
      132,035
    • Most Online (within 30 mins)
      7,748

    bostonbell
    Newest Member
    bostonbell
    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

    • Beverage
      Exactly which blood tests were done? There are a few different ones and some docs don't do them all. Also, your results and reference ranges for each?
    • Jmartes71
      Thankyou so much for your words.Its a hard battle when a supposed well known hospital whose celiac " specialist " has down played me because my colon looks fine and put it in my medical and so pcp doesn't take seriously. In their eyes we all carry that gene.Im having alot of bad days trying to be positive because of it.
    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
×
×
  • 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.