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

Celiac Or Not? So Confused!


trola2

Recommended Posts

trola2 Newbie

I was recently diagnosed with Hashimoto's (an autoimmune disease) and my endocrinologist says it frequently goes hand in hand with celiac. My celiac blood test was negative. But, I had chronic diarrhea and some vitamin deficiency. So, my doc suggested I go gluten free for 30 days.

After about 2 days of being gluten-free the diarrhea stopped and I felt better. But then I'd have occasional bouts of it and I'd tried to figure out if/where I got gluten.

So, after about 45 days I can't tell if gluten is really the issue or not. And I'm so confused. I don't know if it really is gluten causing my issues. Some days I eat gluten and my gut is fine. Other days I don't eat gluten and I have troubles again.

Has anyone experienced anything like this? Suggestions??

Thanks!


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



Celiac.com Sponsor (A8-M):



cassP Contributor

I was recently diagnosed with Hashimoto's (an autoimmune disease) and my endocrinologist says it frequently goes hand in hand with celiac. My celiac blood test was negative. But, I had chronic diarrhea and some vitamin deficiency. So, my doc suggested I go gluten free for 30 days.

After about 2 days of being gluten-free the diarrhea stopped and I felt better. But then I'd have occasional bouts of it and I'd tried to figure out if/where I got gluten.

So, after about 45 days I can't tell if gluten is really the issue or not. And I'm so confused. I don't know if it really is gluten causing my issues. Some days I eat gluten and my gut is fine. Other days I don't eat gluten and I have troubles again.

Has anyone experienced anything like this? Suggestions??

Thanks!

woww... kudos to your endo for knowing the sometimes link.

if it helps u to understand at all: gluten intolerance and celiac is not the same thing as an allergy. sometimes you may notice the negative effects on the same day- and other days you may not... so you cant always judge your reactions to gluten... if you have a problem- the gluten is activating your antibodies which then cause autoimmune damage or inflammation... but that is all inside of you- and you may not always have symptoms..

but... it probably would have been better for your doc to do a celiac panel on u- rather than to 1st try the diet. if you're gluten free- a test may not be accurate.

even if you didnt have celiac or never knew- i hope you DO know tho- that gluten can really aggravate those Hashimoto's antibodies.

Takala Enthusiast

The reaction to gluten, if that is your problem, is not straightforward and immediate in all people. It varies. If you have been off of it for a long time, and then accidentally get glutenned, you also may become acutely more sensitive or at least aware of what it feels like. Also, and this hasn't been discussed much, I think certain medications, smoking, and alcohol are blocking how people can feel their reactions.

A month off of it is not that long. And if you didn't somehow cross contaminate yourself that month, it would almost be a miracle, because it takes time to figure out where are the hidden gluten is. Teflon, tupperware, toasters.... lipsticks, hand lotions, hairsprays - pet foods if your pet drools or licks you - there are a lot of ways that gluten can be lurking.

Keep in mind that chronic D is not normal, nor is vitamin deficiency, nor your thyroid having auto immune problems.

If I were you, I would consider perhaps eliminating soy (that is the 2nd big thing that tends to mess up celiacs, gluten intolerants, and thyroid people) as well, and at least dairy lactose if not both lactose and casein (milk sugar and milk protein) in addition to gluten, and continue with the diet. Eat as simply as possible, keeping a food diary, and introducing new things only when you are sure the old ones don't bother you. You may also be reacting to one of the common ingredients in commercial gluten free foods, so it takes a bit of time to get to where you have no problems.

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. - Florence Lillian replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

    2. - Russ H replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

    3. - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

    4. - Scott Adams replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

    5. - Florence Lillian replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fermented foods, Kefir, Kombucha?

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

    • Total Members
      132,910
    • Most Online (within 30 mins)
      7,748

    Vicki Swor
    Newest Member
    Vicki Swor
    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

    • Florence Lillian
      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
    • Scott Adams
      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
    • Florence Lillian
      I have had celiac for many years and still had terrible digestion. I cook from scratch, never eat anything with gluten ( A Gut that needs special attention seems to affect many who suffer from celiac) .  I made my own Kombucha, it helped my Gut much more than the yogurt I made but I still had issues. Water Kefir did nothing. As a last resort I made MILK Kefir and it has really started healing my Gut. It has been about 2 months now and I am doing so much better. It was trial and error getting the right PH in the Kefir ferment that agreed with my stomach, too little ferment, too much, I finally hit the right one for me. Milk Kefir has the most probiotics than any of the other. I can't find my notes right now but there are at least 30 probiotics in Kefir, Kombucha has about 5-7 and yogurt around 3 if I recall correctly.  I wish you all the best, I know how frustrating this condition can be. 
×
×
  • 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.