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

Symptoms Coming Back...


coltsfan18

Recommended Posts

coltsfan18 Rookie

I have not been "officially" been diagnosed, but have had all of the symptoms and almost immediate relief with a gluten free diet. All of my "IBS" symptoms disappeared. I saw the gastroentrologist, my blood work came back inconclusive, and we decided not to pursue the endoscopy because I was doing so well on the diet. While I may not have an "official" diagnosis, all of my doctor's agree I have some level of gluten intolerance.

I have been gluten-free for about 6 weeks and have been struggling. I did, not so accidentily, gluten myself last Sunday (8 days ago) just to see what would happen and I was miserable. Couldn't even sleep I was in such pain. But, I haven't been feeling good since. My original symptom mainly was constipation followed by diarrhea, and that has come back. I have been very uncomfortable because I cannot pass my stools when I feel like I am going to get sick. I don't know what I have done to make myself feel so awful. I am even back to the awful mood/depression I was feeling before going gluten-free. My husband thinks it may be the all of the soy I have been recently drinking (I used to drink Lactaid, then just milk which made me sick, so I switched to soy).

It is so frustrating because I thought I had my answer and was doing so well, and then I feel like I am back to square one. I have to admit these symptoms aren't accompanied by all of the gas/bloating/cramps etc. I had when eating gluten, but it is no picnic. I even had to go back on my Miralax to see if I could get things going.

Any advice? Is this a normal part of adjusting? Maybe I haven't been so careful with the cross-contamination (my husband and I use the same peanut butter, utensils, etc.), but I would have felt bad before now. Maybe I am not eating enough fiber?

Without an official diagnosis I almost wonder if I am doing the right thing....


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



Celiac.com Sponsor (A8-M):



Mrs. Smith Explorer

You might want to research some vitamins and supplements. Same thing happened to me and I started taking many vitamins and that has helped even more. Remember it is a long road and sometimes frustrating, there will be set backs. Im 6mos gluten-free and still have symptoms a few days out of the month. I just had my 1st "normal" BM a week ago, since I was like 12 years old. (Im 30!) It takes up to 2 yrs to heal the intestine, average time. Try glutamine and slippery elm. Thats what Im taking in a smoothie every morning and it seems to be helping. Reserch celiacs and try some of the vitamins suggested as you may be defficient in some. B12 is a big one but there are many others. Are you taking probiotics? They are a MUST especially if your having D/C. Digestive enzymes with meals are awesome, too. Hope this helps. Hang in there and be positive. You spent all these years poisioning yourself with gluten, it may take a while for your body to rid itself of it.

oceangirl Collaborator

I'd suspect all the soy-many people react to soy in a similar way to gluten. Maybe you should try rice milk or no "milk" for awhile. It is a LONG road with huge learning curves! I am working on 5 years in and it took at least 2 years to "get all the bugs out". At first, however, while healing I was gluten, soy, corn, legume, nightshade, egg and dairy free. I ate mist. But now, I have put dairy back in, corn, some nightshades and egg on occasion.

Keep a food log with symptoms- it is a GREAT help. Hang in there and good luck,

lisa

ravenwoodglass Mentor

I agree that you should drop soy for a while and see if it helps. It seems that many of us do have issues with it. Also make sure that you check all your meds, OTC and scripts for gluten and be careful of CC. In addition some of us have reactions to gluten that last for much longer than we would expect. It takes me about 3 weeks to fully recover from a heavy glutening. I hope that you are feeling better soon.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,894
    • Most Online (within 30 mins)
      7,748

    Lostcha
    Newest Member
    Lostcha
    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

    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
    • trents
      You state in an earlier post that you don't have celiac disease. Here in this post you state you will "be doing another test". What will this test be looking for? What kind of celiac disease testing have you had done? If you have used a Entero Labs it sounds like you have had stool testing done for celiac disease which is not widely accepted as a valid celiac disease diagnostic testing method. Have you had blood antibody testing for celiac disease done and do you realize that for antibody testing to be valid you must have been eating generous amounts of gluten for a period of weeks/months? 
    • Gigi2025
      No, I've not been diagnosed as celiac.  Despite Entero Labs being relocated to Switzerland/Greece, I'll be doing another test. After eating wheat products in Greece for 4 weeks, there wasn't any reaction.  However, avoiding it here in the states.   Thanks everyone for your responses.  
×
×
  • 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.