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

Do Anyones Symptoms Go In Cycles?


LyndaCanada

Recommended Posts

LyndaCanada Rookie

Hi everyone

I haven't posted in a while because I've been feeling really good.... until today that is!:(

I had my biopsy last Monday. The doctor had told me to eat lots of gluten before it which i was really worried would make me sick. I actually wasn't that bad, just really constipated whereas my problem before was always severe diarrhea. So after the biopsy the doctor told me that I could continue the gluten if I wanted until they knew for sure the results of my biopsy. I did have a previous colonoscopy biopsy that suggested Celiac in December but my blood test was negative so that's why they decided to do the 2nd biopsy.

Anyway, for almost 2 weeks, I've been feeling really well, absolutely no diarrhea and continuing to eat gluten-free diet but then, all of the sudden I have diarrhea again this morning!!

I've gone 3 times in about a 1 hour period!:( I'm so disenchanted. I know this is going to take time but does anyone elses bodies go in cycles like this? I don't understand what is causing the diarrhea? I guess maybe i ate more cheese and perhaps I shouldn't have? I've really been watching the dairy products but I was so hungry this weekend?

Sorry, kind of a longwinded way of asking a question but does anyone else find that even on the gluten-free diet you still have relapses of your symptoms even if you continue gluten-free?

I just want to try to understand what my body is doing!! I know everyone's symptoms are different but just hoping I could get a little reassurance I guess. I've been gluten-free for probably almost a month except for about a 4 day period before my last biopsy where my dr. advised me to eat gluten before it.

Any insight or similar experiences? I'd sure appreciate the help!!

Thanks!:)

Lynda


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



Celiac.com Sponsor (A8-M):



Noel1965 Apprentice

Hi Lynda - I can relate Lynda.....I finally got to see my specialist again last week after being told one year ago that I had celiac disease. For an entire year I stayed gluten free and was somewhat obsessive about cross contamination. My symptoms have not improved at all. I have been very frustrated with myself wondering what I am doing wrong and what have I been missing. One thing that has always puzzled me is how most of the people on this site say that they can tell when they have had gluten by a reaction. I feel sick continually and especially after I eat - regardless of what it is. I was told last week that I also has IBS and that is what is causing my symptoms - not the celiac disease. I was given a prescription that I have not yet started taking but I have hope again that maybe things make sense. I'm not sure if any of this will help you, but keep in mind that often there are often multiple diagnoses that can confuse us!! Hope you get back on the "good track" soon.......Noel

aikiducky Apprentice

There are several reasons why you might get symptoms again on the diet.

First of all, like Noel said, there might be something else going , not instead of, but on top of the celiac.

Second, many people find out that they also are sensitive to other foods, like in my case I get exactly the same symptoms from cow's milk as from gluten, and I have to be just as careful with it, too. Other possible culprits could be for example soy, or eggs, or some of the gluten free grains, legumes, nightshades...

Third, it takes time, probably more time than you'd like, to completely heal. I wasn't really fine until two years into eating gluten free.

Fourth, we all swear up and down that we're completely 100% gluten free but we all make mistakes, I know I've made plenty! So it is possible that there's some gluten sneaking in somewhere where you'd not expect it, in makeup for example or a lotion etc. Have you replaced your toaster?

Anyway, it could be any or all of the above... hope that helps!

Pauliina

Cynbd Contributor
Hi Lynda - I can relate Lynda.....I finally got to see my specialist again last week after being told one year ago that I had celiac disease. For an entire year I stayed gluten free and was somewhat obsessive about cross contamination. My symptoms have not improved at all. I have been very frustrated with myself wondering what I am doing wrong and what have I been missing. One thing that has always puzzled me is how most of the people on this site say that they can tell when they have had gluten by a reaction. I feel sick continually and especially after I eat - regardless of what it is. I was told last week that I also has IBS and that is what is causing my symptoms - not the celiac disease. I was given a prescription that I have not yet started taking but I have hope again that maybe things make sense. I'm not sure if any of this will help you, but keep in mind that often there are often multiple diagnoses that can confuse us!! Hope you get back on the "good track" soon.......Noel

Hi Noel,

I was wondering... How were you diagnosed with IBS?

I have been wondering lately if I have IBS too... after being diagnosed with celiac disease I wrote off the previous IBS conclusion, BUT, I started back to school this week and was not feeling well all week. I had D for the first time in weeks, and took immodium, I even had to run out of my first class on Monday in the first 10 minutes of class... I hate that!

I have been obsessively careful too, so I was thinking that IBS may be playing a bigger role than I had hoped, esp since starting back to school for a new semester is always a little stressful. But if it is IBS, it definitely feels the same as being glutened.

I to feel crampy after almost every single meal, but usually that's it, but I do wait for the other shoe to drop. I have been gluten-free for over 9 weeks and felt great the first couple of weeks, and now I seem to be having more problems again. It seems like, as others have said, that after a while our bodies can react to smaller amounts of cc.

key Contributor

Cindy,

I too seem to have some IBS issues besides the celiac. I figure it is either that or cc from somewhere. It is very frustrating. I will be doing great for awhile and then bam. I don't really have an answer for you. My guess is that after going gluten free maybe we have other intolerances or it is cc. I am trying to avoid dairy and beans for now. We will see. That is hard for me, because I am vegetarian. I have always been vegetarian, but my diet is so limited, I am tempted to start eating some meat.

Take care,

MOnica

Archived

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

  • 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. - chrisinpa commented on Scott Adams's article in Additional Concerns
      3

      Going Low-Gluten May Harm Good Gut Bacteria, Researchers Warn

    2. - Flash1970 replied to Ginger38's topic in Related Issues & Disorders
      7

      Shingles - Could It Be Related to Gluten/ Celiac

    3. - trents replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      GI DX celiac despite neg serology and no biopsy

    4. - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      GI DX celiac despite neg serology and no biopsy

    5. - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      7

      Shingles - Could It Be Related to Gluten/ Celiac


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,491
    • Most Online (within 30 mins)
      7,748

    A.N.I.
    Newest Member
    A.N.I.
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Flash1970
      You might try Heallix.  It's a silver solution with fulvic acid. I just put the solution on with a cotton ball.  It seemed to stop the nerve pain. Again,  not in your eyes or ears.   Go to heallix.com to read more about it and decide for yourself Also,  I do think nerve and celiac combined have a lot to do with your susceptibility to shingles breaking out. 
    • trents
      Celiac disease requires both genetic potential and a triggering stress event to activate the genes. Otherwise it remains dormant and only a potential problem. So having the genetic potential is not deterministic for celiac disease. Many more people have the genes than actually develop the disease. But if you don't have the genes, the symptoms are likely being caused by something else.
    • Roses8721
      Yes, i pulled raw ancetry data and saw i have 2/3 markers for DQ2.2 but have heard from friends in genetics that this raw data can be wildly innacurate
    • Ginger38
      Thanks, I’m still dealing with the pain and tingling and itching and feeling like bugs or something crawling around on my face and scalp. It’s been a miserable experience. I saw my eye doc last week, the eye itself was okay, so they didn’t do anything. I did take a 7 day course of an antiviral. I’m hoping for a turnaround soon! My life is full of stress but I have been on / off the gluten free diet for the last year , after being talked into going back on gluten to have a biopsy, that looked okay. But I do have positive antibody levels that have been responsive  to a gluten free diet. I can’t help but wonder if the last year has caused all this. 
    • Scott Adams
      I don't think any apps are up to date, which is exactly why this happened to you. Most of the data in such apps is years old, and it doesn't get updated in real time. Ultimately there is no substitution for learning to read labels. The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
×
×
  • 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.