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

Intermittant Symptoms?


grey144

Recommended Posts

grey144 Newbie

Hi all,

Question from a newbie - Can symtoms be intermittent? I would think that the severity of symptoms could be intermittant, as I understand celiac disease, depending on the amount of gluten consumed. But can symptoms come and go entirely? My problem is I (or my mds) never thought about celiac disease/gluten so I never paid any attention to whether there was anything food-related to incidence.

I hit on the celiac disease possibility when trying to figure out why I have a B12 deficiency - once my rheumatologist had me tested for pernicious anaemia and the test came back negative, he told me I was just stressed, and didn't even want to treat the b12 deficiency. Granted, I am stressed, but...

About a year and a half ago, I had a bout of really severe fatigue and muscle/joint pain, coupled with ataxia and various neuropathies, and a B12 deficiency. I saw a neurologist and rheumatologists, had a million tests, and all they could find was the B12 deficiency. Symptoms eventually improved, but still daily (and nightly) pain and fatigue (milder), as well as constant upset stomach, "urpiness", and frequent nausea and various of the GI-stool symptoms( all started about the same time, as far as I can tell). I also had a really strange, ITCHY, blistery rash for a year or so on my elbows that's pretty much gone now; treated by topical steroids and antibiotics.

But my symptoms aren't always severe or incapcitating - or present. Looking at the big list of symptoms for celiac disease, I have about 30 of them, or have had at one point or another, but may or may not have them now. They've led to me being tested for everything from MS to diabetes. (all negative). Only test that's ever shown anything is the B12 (never explained). I'm being treated for acid-reflux now and my gp. thinks that most of my GI symptoms could be explain by acid reflux.

My m.d. just ordered the TTg test, and I'm waiting for the results. But I understand from reading that if celiac disease isn't very severe, and there isn't yet damage to the intestine, it might come back positive even if I did have celiac disease. I'm trying to decide if celiac disease is a possibility, and whether I should push for more tests if it does come back negative. If I were to go gluten-free, I understand it'd be harder to get an accurate diagnosis.

I hope that some of the more experienced on the board can give me some advice on how best to explore if celiac disease is a possibility for me.

Thank you! And I hope I didn't write too much or ask the wrong kind of question; please forgive the newbie if I did.

Thanks again,

kate


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

My symptoms have never been severe enough to keep me out of work or particularly at home for very long. (I don't get the bad diarrhea...) And they seemed to bother me more at some times than others. I used to think they were intermittent as well, but after going gluten-free, I realized that they were less intermittent than I thought (though not always as bad as on the day before).

kalo Rookie

Hi Kate. I've just been learning about this for under a month. Everything I've read leads me to believe you SHOULD get tested for it. All your symptoms point towards celiac disease. I don't know about intermittent but my doctor did ask me if I ever had times where I felt better. The answer was yes, although very rare. That was before he mentioned he thought I should be tested for this. Anyways, do a search for celiac testing and you will find enterolabs. They have a non invasive simple stool test that is VERY sensitive and accurate and doesn't matter whether you are gluten free or not. Expensive test (if you do the full panel like I did) but worth it. You might also try going gluten free and see how you do after a few months. I'm still waiting for my test results. Hugs, Carol B

celiac3270 Collaborator

Well, all I know about intermittant symptoms is that when you hit puberty symptoms can decrease in severity regardless of gluten intake or go away entirely. This is why doctors used to think that you grew out of celiac disease.

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. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    2. - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

    3. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,034
    • Most Online (within 30 mins)
      7,748

    PitbullTeacher
    Newest Member
    PitbullTeacher
    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

    • knitty kitty
      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
×
×
  • 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.