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

Hi Folks, I'm New Here.


Pete1961

Recommended Posts

Pete1961 Newbie

I'm not convinced 100% its celiac disease, but at the very least I have some awful debilitating irritable bowel symptoms. Ive had it for years - now its just so bad it makes me often worn out and tired, bloated, depressed and jittery at the same time. I nned to see a doc - this week I'm making an appointment to see a GP. Frankly I'd have gone already but the insurance makes it a pain inthe neck. First I see a general practitioner - then a GI doc I suppose. Whats been making me put it off is the way doctors work it'll be a good two months before I finally get any ground covered. I'm making an appointment this week though.

I was doing well. I tried the gluten free diet thing and for a couple of days my stomach and rest of system was rather unusually quiet. No burning and bloating and - you know. Then last night I had some Breyers ice cream and everything went to hell. Im even suspicious of the gluten free pancakes as they made one uncomfortable exit. Since this morning, all Ive had is fatigue from the over reacting intestines.

I had french fries for lunch from a local seafood joint [good actually] and my tract has been noithing but overly warm, bloated... everything it wasnt yesterday.

I dont know... did the Breyers kick it off? They deep fry a lot of junk at the seafood place [ the seafood in any form there rocks though] . Did the french fries do it because of the deep fried batters they fry in the same oil?

I was refreshingly calm yesterday. I woke up today and its been not nice. It started with the exit of the gluten free pancakes from the day before.

Can gluten free prodcuts cause cramps and such like msg? I bought expensive spagheti thats gluten free.

I'm double thinking it now.

Help.

Pete


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



Celiac.com Sponsor (A8-M):



psawyer Proficient

Welcome to the board.

My first guess is the fryer oil. If they fry battered stuff in the same oil as the french fries, some gluten will transfer to the oil and then to the fries.

If you are new to the diet, and have damage to the villi, then digestive issues are likely to continue until the villi heal, even if your diet is 100% gluten-free. Many of us need to avoid dairy, at least at first. There may be other intolerances that exist besides gluten. Some of these may pass. Prior to my diagnosis and gluten-free diet, I knew I had an issue with eggs--I could only have them in small quantities. Since my body has healed on the gluten-free diet, it seems I can eat as many eggs as I want with not adverse effects.

It will take time for your body to heal.

Mother of Jibril Enthusiast

Hi Pete,

Before you dive into the gluten-free diet you really should get the blood test for celiac disease. It's easy and not too expensive... any GP can order it. Once you get the results you can post them on here and get more advice.

A couple of quick thoughts about your experience so far... french fries are off-limits unless you know for sure that things with gluten (wheat, barley, rye) are never fried in the same batter. I would be waaaay too scared to try the french fries at a seafood restaurant. The Breyers might have gluten (I don't know... I'm off dairy products right now). If your intestines are damaged... whether from celiac or another bowel disorder... then I wouldn't be surprised if you have a hard time digesting things like dairy, soy, corn, or even grains in general. Just because it's gluten-free doesn't mean your body can tolerate it (at least not yet) <_<

There's a lot to learn... welcome to the group!

Foxfire62 Newbie

I would say you should first decide whether or not you want to be 100% diagnosed with celiac disease. If so, you need to stay on a gluten diet until blood tests and biopsies of your small intestine confirm you have the disease. I would highly recommend you have this done. I understand how long it can take to confirm. I started having the strangest symptoms in April 2008, and I wasn't officially diagnosed with the disease until August 2008; that's a long time.

Get referred to a GI immediately. Request the celiac blood panel, and even if results are negative, push at the same time you get your blood panel to be scoped and biopsied. Once you are confirmed, go on a strict, VERY strict gluten-free diet. How quickly you recover will be determined by your age and the severity of damage. It can take an adult anywhere from 1-2 years to recover. Young adults or children can take far less.

Until you are recovered, stick with the very dry basics; fresh fruit, vegetables, salad (I'd even stay away from dressing at first), and the freshest of meats. Stay away from processed food!!! Eat only gluten-free breads and pastas. Eat a lot of rice/brown rice/quinoa. I would recommend initially staying away from restaurants and fast food joints, even if they offer gluten-free menus. The reason I say this is because you will be new to all of this, and you should concentrate on recovering and learning more about what you can and cannot have. It is apparent by your post that you aren't too familiar with some of the possible "hidden" sources of gluten (i.e., french fries). Learn about cross-contamination, because this is extremely important.

Do this until you are healed. You can always experiment later once your system is working properly and you understand all the hidden sources of gluten. Then, you should slowly venture out and try restaurants and introduce other gluten-free grocery items in your diet.

Another thing to understand is, if you are indeed a celiac, you can develop intolerances you've never had before to some of the more common allergens, such as lactose, soy, eggs, nuts, etc. You might want to stay away from these until your intestines are fully healed as well.

I am still recovering. I've gone from severely blunted villi to mildly blunted villi, but I continue to have problems digesting fats. It can be a rough road to recovery, and you needn't complicate it, which is why I recommend you stick to the very bland basics before venturing onto foods you believe to be gluten-free. This way, once you are healed, you will know immediately when you are glutened and understand its affect on you.

Those are my recommendations. Good luck!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,700
    • Most Online (within 30 mins)
      7,748

    RelievedP
    Newest Member
    RelievedP
    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

    • 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 
    • Wends
      Wow, the system is crazy isn’t it? Maybe switch Doctors if you can. It’s surprising from what you’ve written it seems obvious it’s celiac disease. The “potential” diagnosis means celiac is developing and it basically just hasn’t done enough gut damage to be captured on the biopsy yet, and meet that “criteria” to satisfy the current system! Given the overwhelming evidence already - family history, positive ttg and ema. And your own experience and intuition which counts far more. And the labs being reproduced after gluten elimination and reintroduction- elimination and reintroduction diet is the gold standard too. Shame on the Doc and the system. What was the Marsh score? I’m guessing not 0 if it’s potential celiac. Meaning the autoimmune process has been triggered and started. Your daughter is obviously very healthy and her immune system is putting up a good fight. It can take years for the gut damage to build to a point where there’s overt symptoms and then a conclusive diagnosis, hence why many celiacs receive diagnosis later in life. You can prevent it. See the positive and the gift in that. Hopefully the gluten challenge confirms it, but if it doesn’t maybe get a second opinion?
×
×
  • 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.