Change Of Diagnosis

[caweismann]

Hello everyone

I am new to posting anything on any website so please bear with me. I am newly self dx with celiacs. I took myself off gluten and thus far have been successful (not to mention happier). The other day I ate 2 flour tortillas before I even realized what I had done. Up until then I had had adverse reactions to gluten containing foods. But I had no reaction whatsoever to the tortillas. Before, I ate a cookie, suffered miserably. Now I am not so sure what is going on. Is there a time frame where once you are healed you then have to build up to the point of suffering again or are all the reactions quick and painful? Is it possible to have the symptoms change like from diarrhea to migraines?

Like I said I am newly and self dx so I am not sure what is going on. I am waiting to be hired on at a new job so I can have some insurance.

Thanks for listening.

Carrie

[gf4life]

Is there a time frame where once you are healed you then have to build up to the point of suffering again or are all the reactions quick and painful? Is it possible to have the symptoms change like from diarrhea to migraines?

It is possible to have a delayed reaction, or a different symptom occur after being gluten-free for a while. I had something similar happen to me. I had been gluten free and needed to go back on gluten for a biopsy. (This is not the recommended way to do accurate testing by the way. It can take 6 months or longer back on gluten to damage the intestines enough to get accurate results.) Anyhow, I got back on gluten and my symptoms were different. I had a little bit of gas, but not terrible at first. It took a good week on gluten (at every meal!) to cause the diarrhea and stomach cramping. I didn't get as many headaches that time around either. Then about two weeks into it I started getting a rash on my hands. I usually only had it on my scalp. It got really bad on my hands and then started to spread down my arms and on my legs in patches. It looked a lot like Dermatitis Herpetiformis, the rash caused by gluten that only happens with Celiac disease. Well after two months back on gluten I was wishing I were dead! I was suffering horribly and I hoped it would be long enough. It wasn't. I tested negative. As far as my doctor is concerned I have IBS. I know it is Celiac (or at least the early stages). I had testing done with Enterolab. I carry one gene that causes Celiac and one that can cause gluten intolerance. I am also producing positive levels of antibodies according to their tests. I know I have a problem with gluten, and I don't care what my doctor says. I have to stay gluten free to be healthy.

God bless,

Mariann

[GEF]

Hello Carrie and welcome.

I experience changing symptoms as well, but what makes it really strange in my case is that I haven't changed my diet yet and it's still happening. Stress seems to play an important role for me. I have no doubts that symptoms can vary. Sometimes I have "D", sometimes I have bloating, sometimes I'm fatigued and every now and then, my knees have an arthritic ache. It can be all or one of them at any given time.

I found this list of symptoms and I thought that I'd post it... sometimes we don't realize the vastness symptoms that we can experience when we are celiac / gluten intolerant:

Open Original Shared Link

Celiac Disease Symptoms

Celiac disease was once thought of a disease with only GI symptoms. It is now recognized that the disease is a multi-symptom, multi-system (organ) disease. Celiac disease also does not routinely present with the 'textbook' symptoms that physicians learn. More often it presents with symptoms that can mimic other problems.

Most physicians recognize the classic symptoms of celiac disease : diarrhea, bloating, weight loss, anemia, chronic fatigue, weakness, bone pain, and muscle cramps. Physicians may not be aware that celiac disease frequently presents with other symptoms, some that do not involve the small intestine. More often, symptoms can include constipation, constipation alternating with diarrhea, or premature osteoporosis. Overweight persons may also have undiagnosed celiac disease. Children may exhibit behavioral, learning or concentration problems, irritability, diarrhea, bloated abdomen, growth failure, dental enamel defects, or projectile vomiting. Others will have symptoms such as rheumatoid conditions, chronic anemia, chronic fatigue, weakness, migraine headaches, nerve problems such as tingling of hands or difficulty walking, or other conditions that are unexplained and/or do not respond to usual treatment. People may have one or more of the above symptoms. Patients are frequently misdiagnosed as having 'irritable bowel syndrome', 'spastic colon/bowel', or Crohn's disease'.

[tarnalberry]

Which reminds me, I ran across an interesting study report (on WebMD) that summarized a study that found a possible (not yet proven) bacterial cause of Chron's. The bug (MAP, a tuberculosis variant that can infect the gut) is apparently a pain to culture in the lab, so it's been hard to tell if patients have it.

Of course, the relationship may not be causal at all, but it's an interesting study. You can find it Open Original Shared Link.

[caweismann]

Thanks for all the info. I am not as alone as I thought.