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

Concerned

electric-bamboo

Recommended Posts

electric-bamboo Newbie
electric-bamboo
Posted

Hi. I'm new to the site. My name is Sarah. I've been wondering if I have Celiac disease for a while now, but I can't afford testing and have no insurance. Here's where I'm at: for a little over year now, i've had diarrhea. Literally every day I have to RUN (not always making it...super embarrassing) to the bathroom, especially after eating, have terrible stomach pains that precede that. I'm constantly bloated, and always exhausted. I bruise so easily that my husband is afraid that people think that he abuses me. Now, lately I've had this consistent itching...not really any rash to be seen, but I do have bumpy bits on the tops of my legs that look a bit like whelps only not red.

I'm really at a loss as to what to do. Should I go gluten-free and see if that makes a difference? My credit can't afford to take another hospital bill that i can't pay, it's already a bad score. I just feel really alone. I've missed work because of how I feel and my boss has asked why I go to the bathroom so much...i'm so embarrassed. :(

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

Hi. I'm new to the site. My name is Sarah. I've been wondering if I have Celiac disease for a while now, but I can't afford testing and have no insurance. Here's where I'm at: for a little over year now, i've had diarrhea. Literally every day I have to RUN (not always making it...super embarrassing) to the bathroom, especially after eating, have terrible stomach pains that precede that. I'm constantly bloated, and always exhausted. I bruise so easily that my husband is afraid that people think that he abuses me. Now, lately I've had this consistent itching...not really any rash to be seen, but I do have bumpy bits on the tops of my legs that look a bit like whelps only not red.

I'm really at a loss as to what to do. Should I go gluten-free and see if that makes a difference? My credit can't afford to take another hospital bill that i can't pay, it's already a bad score. I just feel really alone. I've missed work because of how I feel and my boss has asked why I go to the bathroom so much...i'm so embarrassed. :(

You can go to your Primary Care Doctor and request these tests:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

Or you can go 100% gluten free and see if your symptoms subside. But, we are not doctors and I would encourage you to seek medical advise first. If for nothing else, to rule out more serious issues.

jeanzdyn Apprentice
jeanzdyn
Posted

Oh! I once had diarrhea (much as you describe) off and on for about 2 years. Try taking acidophilus --that is the probiotic that is found in yogurt. You can buy it in capsule form. That really helped me. (At the time I had no health insurance, so I did a lot of research into what I could do, without medical intervention, to make the diarrhea go away.

But, you are describing more of the same kind of symptoms I have experienced.

In view of your circumstances, not having health insurance, etc. I think you should try going gluten free. It is worth trying dietary changes to see if you can feel better or relieve some of your symptoms.

You certainly have come to the right place. There are a lot of people, here on the forum, a huge 'body' of knowledge and ready to share information.

Welcome to the forum.

jeanzdyn Apprentice
jeanzdyn
Posted

Oh! I once had diarrhea (much as you describe) off and on for about 2 years. Try taking acidophilus --that is the probiotic that is found in yogurt. You can buy it in capsule form. That really helped me. (At the time I had no health insurance, so I did a lot of research into what I could do, without medical intervention, to make the diarrhea go away.

But, you are describing more of the same kind of symptoms I have experienced.

In view of your circumstances, not having health insurance, etc. I think you should try going gluten free. It is worth trying dietary changes to see if you can feel better or relieve some of your symptoms.

I also agree with Lisa that you do need to talk to a doctor about this.

You certainly have come to the right place. There are a lot of people, here on the forum, a huge 'body' of knowledge and ready to share information.

Welcome to the forum.

I don't know why this posted like this --I only meant to EDIT the post, not quote it --I clicked on EDIT not quote.

squirmingitch Veteran
squirmingitch
Posted

Hi Sarah & welcome to the board. You are not alone. It certainly sounds like you have some kind of food related problem. And I'm betting it has to do with gluten. Yes, you should try going gluten free & see what happens. Going gluten free is not going to hurt you so that's no problem.

I worry about you having anemia though. Do you think you could swing say a visit to a walk in clinic so you could get tested for that?

Now, if you have celiac disease then many celiacs don't tolerate dairy until they get some healing under their belt so I would say to leave off dairy for a while as well as going gluten-free (gluten free). Also, soy is a big problem for many of us & can cause extreme bloating so lay off soy also. You can add those things back in later & see how you react to each individually.

And here's a link to get you started:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

But for at least a month or if it's proving to help you then for the first 3 months eat only whole foods; meats, fresh or frozen fruits & veggies. Forget all the processed junk. Let you gut heal. And drink LOTS of water to help flush toxins out of your system.

Ask any questions any time.

electric-bamboo Newbie
electric-bamboo
Posted
  • Author

Thanks for the responses! It is nice to know that there are others out there. jeanzdyn: i cried a little when I read that you went through the same stint of diarrhea that i'm dealing with. it was hard for me to even admit that to my husband! i will look into that probiotic you mentioned.

I did a bit of research and found a low-cost clinic that offers many different types of lab testing, but their info says that they aren't always accepting new patients. I am going to call them and see if they are and if they offer the tests that you mentioned, Lisa. *fingers crossed* I know i have to continue to eat gluten for any tests to be accurate, so until then, I will cope.

Thanks for the welcome. It's good to be here.

electric-bamboo Newbie
electric-bamboo
Posted
  • Author

So, i was able to speak with a woman at the clinic, good news is they can perform the tests, bad news is they don't have any appointments for new patients until late september. I don't think I can go on that long with these issues. I am going to try gluten-free diet and focus on whole, unprocessed foods as suggested. I am also going to abstain from dairy and soy as you mentioned, squirmingitch. thanks for that info. looking forward to dinner tonight - going to do fresh kale and cucumber salad with fresh tomatoes stewed over some certified gluten-free pasta the hubby got for me.

Also, there is a walk in clinic across the street that said i can come in for an anemia test on monday for a reasonable price, so i am going to do that.

I am going to keep a food diary to track how i am doing, hope it would be okay to share my experiences on the forum.

Hi Sarah & welcome to the board. You are not alone. It certainly sounds like you have some kind of food related problem. And I'm betting it has to do with gluten. Yes, you should try going gluten free & see what happens. Going gluten free is not going to hurt you so that's no problem.

I worry about you having anemia though. Do you think you could swing say a visit to a walk in clinic so you could get tested for that?

Now, if you have celiac disease then many celiacs don't tolerate dairy until they get some healing under their belt so I would say to leave off dairy for a while as well as going gluten-free (gluten free). Also, soy is a big problem for many of us & can cause extreme bloating so lay off soy also. You can add those things back in later & see how you react to each individually.

And here's a link to get you started:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

But for at least a month or if it's proving to help you then for the first 3 months eat only whole foods; meats, fresh or frozen fruits & veggies. Forget all the processed junk. Let you gut heal. And drink LOTS of water to help flush toxins out of your system.

Ask any questions any time.

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

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

So, i was able to speak with a woman at the clinic, good news is they can perform the tests, bad news is they don't have any appointments for new patients until late september. I don't think I can go on that long with these issues. I am going to try gluten-free diet and focus on whole, unprocessed foods as suggested. I am also going to abstain from dairy and soy as you mentioned, squirmingitch. thanks for that info. looking forward to dinner tonight - going to do fresh kale and cucumber salad with fresh tomatoes stewed over some certified gluten-free pasta the hubby got for me.

Also, there is a walk in clinic across the street that said i can come in for an anemia test on monday for a reasonable price, so i am going to do that.

I am going to keep a food diary to track how i am doing, hope it would be okay to share my experiences on the forum.

Oh YUM! Your dinner sounds delicious! Making my mouth water just reading it & I just finished eating mine.biggrin.gif

Glad you can get the anemia test. If they will do vitamin levels too w/o charging too much then go for it so you know where you stand & know what to take. If you are celiac or even gluten sensitive then odds are you are lacking in the vitamin dept. b/c your body hasn't been absorbing nutrition correctly.

Absolutely! Share any & all experiences here with us on the forum. Believe me, someone has been there before you & can relate to your experiences. If you have any problems, frustrations, questions, rants & raves, venting, or are confused about anything just post it. If you can't figure something out we will all try to help you figure it out.

electric-bamboo Newbie
electric-bamboo
Posted
  • Author

:) Thanks! My homemade tomato sauce is simmering away now and for the first time in a while i'm looking forward to eating! I look forward to seeing where this journey takes me. Trying to be positive about it and looking forward to feeling better/finding an answer.

Oh YUM! Your dinner sounds delicious! Making my mouth water just reading it & I just finished eating mine.biggrin.gif

Glad you can get the anemia test. If they will do vitamin levels too w/o charging too much then go for it so you know where you stand & know what to take. If you are celiac or even gluten sensitive then odds are you are lacking in the vitamin dept. b/c your body hasn't been absorbing nutrition correctly.

Absolutely! Share any & all experiences here with us on the forum. Believe me, someone has been there before you & can relate to your experiences. If you have any problems, frustrations, questions, rants & raves, venting, or are confused about anything just post it. If you can't figure something out we will all try to help you figure it out.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,345
    • Most Online (within 30 mins)
      7,748
    Nana3
    Newest Member
    Nana3
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      This Roller Coaster Ride Needs to Stop

      By Ginger38 · Posted

      Thank you for your kind words and encouragement. This has been the most difficult and confusing journey to date for me, and it has been going on since 2015/2016. The last dietitian I met with works with a lot of celiac patients, so I was excited, but she just thought I should be able to eat gluten free (whatever that may be) stay in a carb count and my diabetes would not be affected. WRONG. I have tried this several times since I crossed over to full blown diabetes, because I get so sick eating gluten that I end up getting frustrated and go back to gluten free to get some relief. I have a continuous glucose monitor so it is easy to see how my body and glucose are reacting to foods. Unfortunately my suspicions are correct. When I eat gluten-free foods -like Schar breads or rolls, or the crackers, including when I stay in my carb limit,  my sugar spikes and just sits there.. .it won;t even come back down for hours. So in the end it drives my overall glucose and A1C up. I can't really even eat oats or things like that. Cereal is very iffy. Gluten free pizzas, gluten free nuggets, and things like that majorly spike my sugar as well, again, even when staying in my carb limits. I already feel so limited on foods because of the diabetes so of course, when medical people and family and friends are like just go eat gluten, I have been like oh okay - maybe it is all in my head and hey its way cheaper to eat gluten and tastes wayyy better...and then I end up right back where I am today,. MISERABLE, just laying around in pain, spending all day in the bathroom, having accidents related to diarrhea, constant tremors, heart rate issues, chest pain etc. and I forgot about these terrible painful canker sores in my mouth right now, I can't even hardly eat or drink or swallow they hurt so bad.  Not being able to feel like I can eat gluten free is extremely frustrating. I had some great recipes and substitutes for things, and was at a decent place with all that, until the diabetes went crazy out of control, so gluten-free living seems to not be an option for me. However, eating gluten when I truly still believe I am celiac -just misdiagnosed- does NOT seem like a wise idea. I am honestly scared  I am going to get deathly ill from all this or something. I even asked my GI doctor, more like begged, if he would please just label me as celiac and tell me I was for sure (like he did before) so I could get the support I truly need. No such luck. He just keeps saying but your tests were okay 🙄 My family went to an arcade and pizza/pasta buffet yesterday - obviously I didn't want to miss out spending time with my family and my mom spent money paying for my meal/buffet - and I was hungry, so of course I ended up eating pizza and pasta that was not gluten-free, because they don't offer any gluten-free options, and then my brother and others want to ask can you eat that or are you supposed to, and I am like well no, and I will definitely pay for it. They think it is hilarious when I say things and then make comments, like how it is so fun to go out with me especially places like that because I am not supposed to eat but I just do it anyway and say I will pay for it 😥 just seems everywhere I turn it is pointless and I have no support 
    • Wheatwacked
      Am I celiac or not?

      By Wheatwacked · Posted

      Just like you cannot be a little pregnant, you cannot be a little Celiac.  Here is an article I found that explains what the numbers mean. Are You Confused About Your Celiac Disease Lab Results? Here is another article about the non traditional symptoms of Celiac Disease. What Are the Symptoms of Celiac Disease? I've been taking 10,000 IU vitamin D3 since 2015.  My blood tests every 3 months for 25(OH)D have never gone above 93 ng/ml, even in the Florida summer.  70 - 100 is the body's natural homeostasis level. Surge of information on benefits of vitamin D "“When combined with supplemental magnesium, vitamin D repletion has dramatically changed my practice,” said McCarthy ... “There are now very few patients with infections, and asthmatics who are coming off medications are staying off of them. ... A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects; ... Colon cancer data showing a reduction in the incidence of new cancer (linear) with postulated 0 point at 75 ng/mL;
    • somethinglikeolivia
      Am I celiac or not?

      By somethinglikeolivia · Posted

      Interesting! Recent labs I had done did show that I was low in Vitamin D so I just began supplementing, it’s hard to tell so soon but it does seem to have a positive affect! Thanks for the input!
    • Scott Adams
      This Roller Coaster Ride Needs to Stop

      By Scott Adams · Posted

      Your frustration and exhaustion are completely valid, and many in the celiac and gluten-sensitive community can relate to the overwhelming confusion you're experiencing. You’re being pulled in different directions by medical advice that seems contradictory, and it’s heartbreaking that your efforts to feel better are met with so many setbacks. Positive TTG IgA antibodies are not something to brush off, especially when combined with your long list of debilitating symptoms that clearly worsen with gluten exposure. A negative biopsy does not necessarily mean you don’t have celiac disease—it’s entirely possible that damage was missed, especially since biopsy results can vary depending on where the samples are taken and how many are collected. It’s also true that celiac disease exists on a spectrum, and many people have serious symptoms and immune responses without yet showing classic biopsy damage. Managing diabetes alongside suspected or confirmed celiac disease is incredibly tricky, especially when healthcare providers don’t work as a team to support your whole health. You shouldn’t be forced to choose between controlling your blood sugar or protecting your gut and immune system. A well-planned gluten-free diet can be both nourishing and diabetes-friendly, especially with guidance from a knowledgeable dietitian who understands both conditions. It’s also deeply concerning that your symptoms—neurological issues, severe fatigue, GI distress, rashes, and more—are being dismissed. You’re not just describing discomfort; you’re describing a level of illness that’s life-altering, and your instincts that something is seriously wrong are absolutely worth trusting. You know your body better than anyone. You deserve a team that listens, believes you, and helps you build a realistic, sustainable path to healing. Whether it’s celiac disease, non-celiac gluten sensitivity, or something else, you have every right to go gluten-free permanently if that’s what makes you feel functional. Many people never get a “perfect” diagnosis but reclaim their health by honoring their own experience and choosing a path of least harm. You are not crazy, you are not weak, and you are not alone. Keep advocating for yourself—you and your daughter both deserve a healthier, more stable life.
    • Wheatwacked
      Am I celiac or not?

      By Wheatwacked · Posted

      While a definitive causal link remains unclear, vitamin D's known role in immune modulation and intestinal barrier integrity suggests that it plays a significant role in the development and progression of celiac disease.  Reduced 25(OH)D levels are associated with celiac disease.  In celiac disease, gluten can damage these tight junctions, and vitamin D may play a protective role in this context. 
×
×
  • Create New...