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
coltsfan18
Posted

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
Mrs. Smith
Posted

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
oceangirl
Posted

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
ravenwoodglass
Posted

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.

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


  • Member Statistics

    • Total Members
      131,898
    • Most Online (within 30 mins)
      7,748
    MLucia
    Newest Member
    MLucia
    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

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      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
      Gluten free beer ?

      By Scott Adams · Posted

      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
      Patiently Waiting to See Results

      By trents · Posted

      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. 
×
×
  • 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.