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

Been Gluten Free But Getting Sick Again... Help


annabanana

Recommended Posts

annabanana Newbie

Hello, so I'm a 24 year old female with Celiac's. I was diagnosed when I was 15 so I've have gotten a handle of the diet and have been fine, but lately I been getting diarrhea, bloating, gas, all for multiple days at a time. Its gotten to the point where I can feel myself becoming malnourished and I've been trying to supplement my diet with lots of protein drinks and vitamins, but I just can't shake the digestion problems and I know I haven't eaten anything that would cause me to be sick like this, for this long. Any suggestions? I'm also allergic to dairy, and I know my body can't handle the high fat content of pork and some beef cuts so I do avoid those, I'm just hitting a wall as to what it could be.


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



Celiac.com Sponsor (A8-M):



magnesium Newbie

Hi i might be able to help you i have celiac disease and all of my family as well.interestingly we all got better on the diet for a while but then slowly started having more ploblems just like you stated.i will try to keep this as short as i can.i am only guessing your diet was probaly similar to ours [low fat high fibre high carb low protien]sorry if i am wrong.my family and i changed to a different way of eating and it changed everything.you see the modern celiac diet is a bit of a trap because to many high sugar high carbohydrate snacks and foods.there are strong links between celiac disease and candida ablicans because we have weekend immune systems candida are bad bateria that live in us they feed off sugar and carbo,s and mutiply to the point where the will make you sick like you are discribing similar to celiac disease itself i believe this is what they call refractive celiac disease.never happenned much years ago because the gluten free diet didnt have all the high sugar carbo meals we do now.now try and be open minded because this was hard for me at first but to kill candida you need to eat a very low carbohydrate high protien and high fat diet this starves the bateria and they slowly die off.killing candida is not a lot of fun causes strange reactions but eventually it works all of us now are so much better .basic diet meat,vegatable small amounts of fruit 2 tops because there high in natural sugars, nuts, eggs and thats it i have done this for 2 years and i feel great.this is how our ansestors ate and they had no disease.sorry it was long feel free to ask me any quetions.thanks. by the way the is a lot of good information about this diet and candida on the internet check it out buy.

eatmeat4good Enthusiast

Have you tried eliminating the other food allergens? Soy, nightshades, fish, shellfish, nuts, peanuts, eggs?

Soy effects me terribly. I have other food intolerances too. They may not show up on allergy testing if they aren't true allergies, but they can make you just as sick as Celiac.

If you have insurance check for other GI bacteria. Several can make you really sick. They have tests for some of these. Medication is the only answer in some of these situations. You could do food allergy testing if you think that might help and you have insurance. If you don't have insurance...eliminate the big 8 allergens, then corn, and see how you do adding them back in one at a time.

Also, some people have responded really well to the SBC Specific Carbohydrate Diet. There is a website for it and also a lot of folks here who are grain free and have written posts on the SBC diet. It is a grainfree diet but some do not get well until they go that route.

Salicylic acid and food preservatives and dyes can also cause your symptoms. It sounds like you have developed other allergies or intolerances. I'm sorry you are feeling so badly after being gluten free for so long.

Might be something wrong inside. If I had a GI I would ask for the scopes and some tests for other things that can cause the symptoms.

Also, have your vitamin levels checked to see if you are deficient in anything. Thyroid levels would be helpful too.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,701
    • Most Online (within 30 mins)
      7,748

    Patticolw
    Newest Member
    Patticolw
    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

    • Wends
      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
      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
      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
      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.
    • Bennyboy1998
      Yes gene HLADQ2 was positive 
×
×
  • 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.