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.

  • 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. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      Related issues

    2. - MogwaiStripe replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

    3. - knitty kitty replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Gluten Issues and Vitamin D

    4. - knitty kitty replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,246
    • Most Online (within 30 mins)
      7,748

    IRENEG6
    Newest Member
    IRENEG6
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Mari
      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
    • MogwaiStripe
      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
    • knitty kitty
      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
    • Scott Adams
      This article may be helpful:  
×
×
  • 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.