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

Gluten Intolerance?

zeelily

Recommended Posts

zeelily Newbie
zeelily
Posted

I have decided to try a gluten-free diet as of 1 week ago. A few of my friends have recently gone gluten-free for symptoms similar to what I have been experiencing. Sorry to be so graphic and descriptive, but I want to provide as much info as possible to get help. I really appreciate those of you who take the time to read my long description! So here is my story:

About 6 years ago, I started having loose-ish bowel movements which seemed to occur more frequently than normal and were very urgent. I figured that I was just under a lot of stress and knocked coffee out of my diet for a while. Things never really got better, but I ignored everything until recently. I currently drink caffeine.

I had a baby 1 year ago. I am not one to throw-up (didn't even get morning sickness), however, since the baby was born there have been 4 or 5 instances when I have woken up in the middle of the night with terrible diarrhea, dizziness, and sometimes vomiting. I will end up taking imodium which works after about 30 minutes.

Over the last several months, I haven't gone a day where I don't wake up in the morning (and even sometimes in the middle of the night) with a sudden urge to have to use the bathroom (loose bowel movements, not quite diarrhea all the time). There are mornings where I have to use the bathroom up to 5 times before leaving the house (during a 1.5 hour morning routine)! I really feel as though the odor is fouler than it should be and I know this is incredibly disgusting, but I think I can smell what I had eaten the day before. This makes me think that I am not absorbing my food well enough.

I ended up missing work last week because I didn't feel well. My husband suggested that I start a gluten-free diet to see if it helps. Now that I have started gluten-free, I have been doing a lot of research and I think if I am really gluten intolerant or have Celiacs, a lot of questions might be answered.

Here are some other things that have been going on with me over the last few years:

-I had gestational diabetes while I was pregnant. This was a big shocker to myself, my family and the doctors because I don't fit any of the risk factors. I am really active and eat healthy, don't have diabetes in my family, am young (29) and am slightly underweight (not by choice, this has always been my body type).

-I was slightly anemic during my pregnancy. Blood tests came back negative for anemia after delivery. I continue taking my prenatal vitamins every night.

-5 months after having my baby, an old back injury suddenly flared up. I was unable to get rid of the back pain using the methods that previously worked. I still have the back pain and it has been 6 months. PT and yoga don't help like they used to. My orthopedist thinks that my pain will go away after I stop nursing because my hormone levels will resume to normal. My rheumatologist thinks that I am someone with looser than average joints. My OB thinks I should go to a chiropractor. Nobody can really give me an answer or a solution.

-8 months after having my baby, my ankle that I had sprained 3 years previously, randomly swelled up. It was to the point that I was on crutches. My ankle is still swollen 3 months later and there are days when I can't walk on it.

-I have had a lot of blood work done recently due to my joint pains (doctors can't figure out what's going on). White blood cell count came back slightly elevated and my thyroid (TSH?) levels came back a bit low. My docs weren't alarmed by these levels and just told me to get re-tested in a few months.

I'm hoping that all of these things that I have been experiencing are tied together somehow and that by changing my diet, I can find a solution. The diarrhea is one thing, but the joint pain has completely altered my life. I have not been able to work out (not even walk the dog around the block) for 7 months!

Does anyone have any thoughts or suggestions? I really appreciate it! Thanks!!!

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

Celiac.com Sponsor (A8-M):


Dixiebell Contributor
Dixiebell
Posted

Welcome to the forum!

I would call your Dr. today and ask for these tests. The longer you are gluten free your tests can show false negative. To make it even better, they can show false negative anyway.

total iga serum

Tissue Transglutamas Iga & Igg

Antigliadin Iga & Igg

Endomysial Antibodies

There is also a deamidated gladin test.I think this is a newer test.

I would also get them to check your vitamin levels. Low vitamin levels can cause you to feel bad too.

Oh, and don't let them label you with IBS. From what I have been reading, IBS does't wake you at night.

Best wishes to you!

kpryan Apprentice
kpryan
Posted

Get tested specifically for Vit D as well... hope you find an answer soon!

Welcome to the forum!

I would call your Dr. today and ask for these tests. The longer you are gluten free your tests can show false negative. To make it even better, they can show false negative anyway.

total iga serum

Tissue Transglutamas Iga & Igg

Antigliadin Iga & Igg

Endomysial Antibodies

There is also a deamidated gladin test.I think this is a newer test.

I would also get them to check your vitamin levels. Low vitamin levels can cause you to feel bad too.

Oh, and don't let them label you with IBS. From what I have been reading, IBS does't wake you at night.

Best wishes to you!

Cypressmyst Explorer
Cypressmyst
Posted

You may want to check out the videos and blogs of Dr. Vikki Petersen. Lots of useful information on how gluten can effect us in insidious ways. :)

I found them to be very valuable in my research and to give my eyes a break from so much reading. :)

Open Original Shared Link

sb2178 Enthusiast
sb2178
Posted

Make sure you are examined for Crohn's and colitis as well. Which is not to say that your symptoms aren't celiac, just that the nighttime issues are pretty common in those diseases. The whole process of elimination...

Some people have found that gluten-free helps with those as well.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. ShariW
      - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

      In addition to gastrointestinal symptoms like diarrhea, I had gastroesophageal reflux that was becoming intolerable despite treatment with PPIs and antacids. When I went gluten-free, the GERD lessened tremendously (as did the other symptoms).
    2. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      Thank you so very much Scott. Just having someone understand my situation is so very helpful. If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    3. Scott Adams
      - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to ...
    4. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating...
    5. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748
    ebrown
    Newest Member
    ebrown
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      I think I am gluten intolerant

      By Scott Adams · Posted

      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.