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

Various Questions......


Swartzmj

Recommended Posts

Swartzmj Newbie

I was recently diagnosed with celiac in early March of this year after 3 months of bouncing around from doctor to doctor. I


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



Celiac.com Sponsor (A8-M):



happygirl Collaborator

A short piece of advice:

Get copies of your medical records, including bloodwork for Celiac and biopsy reports. Call a local Celiac support group and ask for an experienced GI that their members use (that is educated about Celiac). Take your records and get to a doctor that will be able to provide the follow-up care and support that you need.

And welcome to the board! I'm sure others will chime in.

ksymonds84 Enthusiast

I

Ridgewalker Contributor

Firstly, I second what happygirl suggested. It's what you need to do if you think that something else is going on on top of the Celiac.

Having said that, is it possible that you're still getting gluten somewhere? You said you've done a lot of reading, so are you pretty familiar with common areas of--

* Cross contamination? (i.e. toasters, collanders, cutting boards, dishcloths, communal jars of mayo, etc.)

* Have you checked your shampoo and conditioner, and soap?

* All vitamins and medications you're taking?

* Maybe even your girl friend's lipstick? :D

Are you eating oats? Mainstream oats/oatmeal are virtually always contaminated with wheat. Some Celiacs can't tolerate even certified gluten-free oats.

And of course, as you said... it often takes a long time for symptoms to completely go away. It's quite possible, maybe likely, that you had Celiac for much longer than your acute symptoms. It takes time for that damage to heal.

AliB Enthusiast

It often takes something to trigger the external symptoms off - it can be anything. Mine was a change of medication for my diabetes but for others it can be surgery, a trauma, an accident, well, anything and sometimes very little at all. I would suspect that your stomach problem was lurking in the background but it might have taken the 'binge' to set it all off, even if it was only a 'minor' one in the scheme of things.

Cross contamination is a definite possibility, but I would consider other foods also as possible antagonists. Some often have problems with other foods like corn, or soy, for instance. My stomach problem came on fairly quickly and although I was taken off the medication it did not recover and gradually got worse and I would also suffer dizziness and sweating/clammy spells. Eventually my digestion all but collapsed in January but like you, nothing was found.

I did my own research and stumbled upon Celiac, went for the blood test then started it immediately. Within 5 hours the pain was gone. The difference is that I not only stopped gluten, but also dairy and most carbs and sugar. Because I was still getting some reactions I realised it wasn't just gluten but carbs per se, plus some other things.

I have been focusing on the Specific Carbohydrate style of eating which is based on plain foods - 100% meat, fish and poultry, fresh fruits and veg and a little honey. Whilst it is not always easy, it is helping my gut heal quicker and now, after 2 months i can cope with a few foods that I couldn't a few weeks ago, like eggs.

I took some Milk Thistle capsules for a while to support my liver and have been taking some good supplements and whilst I still get tired, I am getting more energy and am sleeping better, so can now begin to see the light at the end of the tunnel.

Bacterial overgrowth can sometimes be a catalyst for stomach and bowel problems too. Damage to the gut can mean that the carbs we consume ends up as food for the 'bad' bacteria and encourages its proliferation. Your drinking spree undoubtedly involved a major dose of carbohydrates which would have done nothing but exacerbate the situation. Most carbs are a problem but anything sugar-based sends the bacteria into absolute ecstasy!!! The only way to control is to not feed it the food that feeds it! Unfortunately it likes what we like, so we don't always help ourselves!

MDRB Explorer

I agree with what has already been written but have a couple of things to add.

A lot of celiacs have a problem with dairy, but only until their body has healed.

I would try cutting out the dairy for a while and re examining your diet for sources of gluten (ie additives in sauces etc) a food/symptoms diary is a good way to pin point what might be making you sick.

Also watch out for cross contamination. Buy a new toaster and chopping boards and rid your house of anything containing gluten.

I personally would not bother with a nutritionalist, most of them have no clue about celiac disease and will likely just tell you to eat less fatty foods and eat only organic produce.

Come back to this forum instead, the people are really knowledgeable and happy to help out.

Good luck

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

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

    • Total Members
      132,913
    • Most Online (within 30 mins)
      7,748

    Jennrhart
    Newest Member
    Jennrhart
    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

    • xxnonamexx
      very interesting thanks for the info  
    • 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/
×
×
  • 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.