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

Is It Celiac Or Something Else?

melibig

Recommended Posts

melibig Newbie
melibig
Posted

I will try not to ramble so excuse me if I do.

 

Starting from the beginning. 

 

After the birth of my second child Sept 2013, my body just felt tired and achy, I was tired all the time, and my joints hurt. I went to the dr they did blood work, and said that that is just how it is going to be after kids. I didn't believe that for a minute. A few months after that I started getting an upset stomach a few times a week (august 2014). I started seeing a gastrointerologist late October and he suggested a colonoscpoy and endoscopy. With that he said that my stomach lining had similar patterns to that of Celiac. He did blood work after that and told me to try a gluten free diet and see how that helped. 

 

I have been gluten free since November, with a few accidents, and I am feeling better but not 100%. The most improvement has been with my energy levels and joint pain. I am still having an upset stomach and nausea a few times a week. I have a follow up apt scheduled for next week but wanted to know if any of you have experienced this before. I feel like I have been really strict with my diet and if I have gotten gluten it has not been intentional. It is incredibly frustrating to live this lifestyle and it not be better. Don't get me wrong I am incredibly thankful for the energy and my joint pain to be gone, I just would like to know what the deal is with my stomach!! 

 

Thanks in advance for any help or advice!!

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Do you actually have Celiac or not?  The doc sounds a bit wishy washy with this "try gluten-free" stuff.  If it isn't Celiac, he should be looking for other issues.

melibig Newbie
melibig
Posted
  • Author

Do you actually have Celiac or not?  The doc sounds a bit wishy washy with this "try gluten-free" stuff.  If it isn't Celiac, he should be looking for other issues.

Now that I have had time to think back on the whole experience he was wishy washy. My blood tests were never discussed with me, he just said the lining looked similar to Celiac. 

 

I am debating on whether or not to eat gluten again and see what happens. I don't want to go full blown because I am feeling more energized I just don't want to be as strict if its not necessary. 

kareng Grand Master
kareng
Posted

Now that I have had time to think back on the whole experience he was wishy washy. My blood tests were never discussed with me, he just said the lining looked similar to Celiac. 

 

I am debating on whether or not to eat gluten again and see what happens. I don't want to go full blown because I am feeling more energized I just don't want to be as strict if its not necessary. 

 

 

I would suggest you get copies of the Celiac blood tests and the biopsy (pathology) report from the endoscopy.  Celiac si not diaganosed by how a stomach lining looks.  A GI doc will take biopsies of the small intestines and then a pathologist will look at them under a microscope.  Sometimes the damage in the small intestine is bad enough that the doc can see it with the scope - but they still take multiple biopsies to be certain.

Archived

This topic is now archived and is closed to further replies.

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


  • Member Statistics

    • Total Members
      132,144
    • Most Online (within 30 mins)
      7,748
    Jenny0384
    Newest Member
    Jenny0384
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan out in the long run. I'm not sure it's any one thing but may, instead, be a combination of things that coalesce at certain times. It's very frustrating. The medication (sumatriptan or "Imatrix") is effective and is the only thing that will quell the pain. NSAIDs, Tylenol, even hydrocodone doesn't touch it. But they only give you 9 does of sumatriptan a month. And it doesn't help that medical science doesn't really know what causes migraines. They know some things about it but the root cause is still a mystery.
    • Scott Adams
      Tamale ingredients

      By Scott Adams · Posted

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    • Wheatwacked
      GI DX celiac despite neg serology and no biopsy

      By Wheatwacked · Posted

      Just a gluten free diet is not enough.  Now you have to identify and replenish your malnutrition.  Celiac disease is co-morbid with malabsorption syndrome.  Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely.  It takes time to heal and you need to focus on vitamins and minerals.  Gluten free foods are not fortified like regular processed foods.  
    • Sarah Grace
      Headaches / Migraines and Hypoglycaemia

      By Sarah Grace · Posted

      Dear Kitty Since March I have been following your recommendations regarding vitamins to assist with various issues that I have been experiencing.  To recap, I am aged 68 and was late diagnosed with Celiac about 12 years ago.  I had been experiencing terrible early morning headaches which I had self diagnosed as hypoglycaemia.  I also mentioned that I had issues with insomnia, vertigo and brain fog.   It's now one year since I started on the Benfotiamine 600 mg/day.  I am still experiencing the hypoglycaemia and it's not really possible to say for sure whether the Benfotiamine is helpful.  In March this year, I added B-Complex Thiamine Hydrochloride and Magnesium L-Threonate on a daily basis, and I am now confident to report that the insomnia and vertigo and brain fog have all improved!!  So, very many thanks for your very helpful advice. I am now less confident that the early morning headaches are caused by hypoglycaemia, as even foods with a zero a GI rating (cheese, nuts, etc) can cause really server headaches, which sometimes require migraine medication in order to get rid off.  If you are able to suggest any other treatment I would definitely give it a try, as these headaches are a terrible burden.  Doctors in the UK have very limited knowledge concerning dietary issues, and I do not know how to get reliable advice from them. Best regards,
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
×
×
  • 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.