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

Strange Shift In Symptoms After Starting gluten-free Diet... Still Possible Celiac?

vegan lisa

Recommended Posts

vegan lisa Rookie
vegan lisa
Posted

Hi! I'm new here.

Short background: I've been having severe stomach pain in the upper left abdomen for 6-8 months and off and on for years before that. My doc (mis)diagnosed gastritis and put me on nexium, which did help a little. Then I developed the strange diarrhea, foul smelling gas, total brain fog to the point of seriously impacting my family and work. I got a referral to a gastroenterologist who suspected celiac. I had the scope a week and a half ago, and started the gluten free diet at that point.

Immediately I felt better and had normal bowels for 3 days in a row, but had developed reflux and heartburn instead. Now the funny diarrhea is back (milder, and off and on, but still there). The gas is starting to come back, the brain fog has been replaced by dark mood swings. The heartburn and feeling that something is stuck in my throat are highly uncomfortable. The only thing that is not back is the burning/piercing pain in my upper abdomen! (yay!)

I may have had 2 mishaps with cross contamination last week, but it's been 4 days since I ate anything risky. I even had my dear friend over who has celiac, who we routinely have for dinner, and she is fine after eating our fairly simple food.

So am I going to be surprised at my GI appointment when I find out I DON'T have celiac? Because that's what I'm expecting. Except that I don't feel better, so I don't know what to think... I really want to feel better, bottom line. I was hoping eliminating gluten would do that. My friend who has celiac felt better right away, and totally better in 3 days. I don't...

What do you all think?

Thanks for the support!

Lisa

-vegan, mom to daughter with food allergies, so I know how to avoid foods and read labels, wishing I felt well!

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

Celiac.com Sponsor (A8-M):


lisa25 Rookie
lisa25
Posted

After starting gluten free, I felt a little better. My headaches changed from pounding to more pressure/nausea. It wasn't until I found out I was sensitive to dairy and soy (and eliminated them from my diet) that I actually started to feel a lot better. I was also still having a lot of GI symptoms before getting rid of dairy and soy.

Korwyn Explorer
Korwyn
Posted

Hi lisa,

Similar story. Got better, developed more/new symptoms after going gluten-free. Tested positive for casein IgA, eliminated all dairy, that took care of the gas, D, reflux, vomiting. Still had psych (anxiety, panic attacks, insomnia) and some neuro issues. Eliminated all soy (including soy lecithin) and those began to resolve.

Archived

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

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


  • Member Statistics

    • Total Members
      131,702
    • Most Online (within 30 mins)
      7,748
    Coach Chris
    Newest Member
    Coach Chris
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Gigi2025
      How Come Gluten Didnt Bother Me In Italy

      By Gigi2025 · Posted

      Hi Christiana, Many thanks for your response.  Interestingly, I too cannot eat wheat in France without feeling effects (much less than in the US, but won't indulge nonetheless).  I also understand children are screened for celiac in Italy prior to starting their education. Wise idea as it seems my grandson has the beginning symptoms (several celiacs in his dad's family), but parents continue to think he's just being difficult.  Argh.  There's a test I took that diagnosed gluten sensitivity in 2014 via Entero Labs, and am planning on having done again.  Truth be told, I'm hoping it's the bromine/additives/preservatives as I miss breads and pastas terribly when home here in the states!  Be well and here's to our guts healing ❤️
    • Wends
      Inconclusive results

      By Wends · Posted

      Lol that’s so true! Hope you get clarity, it’s tough when there’s doubt. There’s so much known about celiac disease with all the scientific research that’s been done so far yet practically and clinically there’s also so much unknown, still. Out of curiosity what’s her dairy consumption like? Even compared to early years to now? Has that changed? Calcium is dependent in the mechanism of antigen presenting cells in the gut. High calcium foods with gluten grains can initiate inflammation greater.  This is why breakfast cereals and milk combo long term can be a ticking time bomb for genetically susceptible celiacs (not a scientific statement by any means but my current personal opinion based on reasoning at present). Milk and wheat are the top culprits for food sensitivity. Especially in childhood. There are also patient cases of antibodies normalising in celiac children who had milk protein intolerance/ delayed type allergy. Some asymptomatic. There were a couple of cases of suspected celiacs that turned out to have milk protein intolerance that normalised antibodies on a gluten containing diet. Then there were others that only normalised antibodies once gluten and milk was eliminated. Milk kept the antibodies positive. Celiac disease is complicated to say the least.
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      And thank you for your encouragement. I am glad that her body is doing a good job fighting it. I also just want clarity for her moving forwards. She was only 6 for the last round of testing and she's 10 now, so I'm also hoping that makes a difference. It was weird during her last round of testing though, because right before her biopsy, we'd upped her gluten intake by giving her biscuits made from straight up vital wheat gluten, and her labs actually normalized slightly (lower ttg and her ema went negative). Bodies just do weird things sometimes! lol
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      The first negative biopsy in 2021 just said "no pathological change" for all the samples, and the second one in 2022 said "Duodenal mucosa with mild reactive change (focal foveolar metaplasia) and preserved villous architecture." So I think Marsh score 0 in both cases, though it's not actually written in the pathology reports. I'm really hoping to get a clear positive result this time, just for her sake.  
    • Wends
      Blood results

      By Wends · Posted

      Hopefully the biopsy gives a conclusive and correct diagnosis for your daughter. Im in the UK and have been in the situation a few years ago of trying to rule celiac in or out after inconclusive results. Many symptoms pointing to it including the classic symptoms and weight loss and folate and iron deficiency. You have to play a waiting game. I also had the label of IBS and likely food allergy. Genetic test showed low risk for celiac but not no risk. It sounds like the Gastroenterologist is on it and hopefully will diagnose what it is correctly. Food hypersensitivity (allergy) can also cause similar symptoms and inflammation as well as mimicking IBS. Milk / dairy and wheat (cereal grains) being the biggest culprits. The “oesophagitis” and “gastritis” you mentioned can be caused by another gastrointestinal disorder called “eosinophilic gastrointestinal disorders”. These are named depending on which part of the gastrointestinal tract is affected. For example eosinophilic oesophagitis, eosinophilic gastritis, eosinophilic gastroenteritis, and more rare eosinophilic colitis. They are antigen (allergen) driven. When the blood test measuring anti-ttg antibodies is positive in absence of a positive ema test - which is more specific to celiac, this can also suggest food hypersensitivity (allergy). Usually delayed type allergy similar to celiac but not autoimmune if that makes sense. In this case the ttg antibodies are transient. Which happens. I’ve first hand experience. For info, evidence of villous atrophy too can be caused by food hypersensitivity. Not just by celiac disease. In Egid disorders the six food elimination diet, under a dietitian and gastroenterologist care, is the dietary protocol to figure out the culprit or culprits. Sometimes only two food elimination diet is used at first. The number one culprit is milk protein / dairy. Followed by wheat, eggs, soy, fish and seafood, and nuts. Most are only reactive to one food group or two. Most are only reactive to milk. Hope this is a helpful reply.
×
×
  • 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.