Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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:
    Help Celiac.com:
    eNewsletter
    Donate

Deterioration after one year - confused and worried


Jammy27

Recommended Posts

Jammy27 Rookie

Hi everyone,

I've posted a couple of threads over the past few months but could really use some advice. I was hospitalised last January and placed on a nasogastric tube for feeding as I could no longer eat orally due to severe abdominal discomfort. I was diagnosed with Coeliac two weeks later. I came off the tube in April after finding that my symptoms had improved and I could tolerate normal food again. Over the summer I found certain foods I couldn't tolerate and did feel bloated etc. at times but overall I felt I was stable/improving.

Around September, I started to feel ill again, although the symptoms are not so much 'fullness' like they were from the gluten pre-diagnosis, more the kind of feeling you get if you've eaten something 'off'/have food poisoning, as well as nausea, heartburn and major fatigue after eating. These sensations continued to get worse until I eliminated dairy as suggested by my doctor (I cut out soy too). This helped a little with some of the worst symptoms but now I find they're getting more severe again, and I feel like I'm going round and round in circles trying to get to the bottom of what could be causing this but with no success. Could eggs be an issue potentially? It just feels like I'm stabbing around in the dark. I'm very careful with the gluten-free diet - I check all products meticulously, prepare all meals myself and watch out for cross contamination.

Obviously I'm scared because of how serious things got last year and don't want to go back into hospital/on the tube again. I've had a gastric emptying scan and that was normal. Does anyone have any ideas?  Has anyone improved on the gluten-free diet then felt worse again and if so, what helped you to feel better?

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



fergusminto Apprentice

Read up about Zonulin - it might answer a few questions and reduce your stress levels. You are not the only Coeliac with these problem believe me! celiac disease can bring intolerances with it. T

Link to comment
Share on other sites
GFinDC Veteran

Hi Jammy,

I am sorry to hear you are having problems on the gluten-free diet.  Healing our guts is not always fast, as the immune response is not always shut down very quickly.  Also, even a tiny amount of gluten can keep the immune response going, or kick it off in high gear again.

Another problem is our gut bacterial flora can be out of whack due to the long term celiac disease damage.  We can't always digest carbs and sugars correctly and the undigested carbs provide a massive food source for nasty bacteria.  That's why it is helpful to limit carbs and sugar and dairy for that matter.

Assuming your issues are related to celiac disease, there are some steps you can take.  One, make sure you are 100% gluten-free.  No cross contamination or risky foods like processed foods.

Try an elimination diet.  An elimination diet can help us determine if we are reacting to one or more foods.  It is possible to have more than one food intolerance crop up.  A person can develop an intolerance to any food.  The most common food allergens (the top 8) in the US are

**********************************************

Open Original Shared Link

Major Food Allergens

While more than 160 foods can cause allergic reactions in people with food allergies, the law identifies the eight most common allergenic foods. These foods account for 90 percent of food allergic reactions, and are the food sources from which many other ingredients are derived.

The eight foods identified by the law are:

  1. Milk
  2. Eggs
  3. Fish (e.g., bass, flounder, cod)
  4. Crustacean shellfish (e.g. crab, lobster, shrimp)
  5. Tree nuts (e.g., almonds, walnuts, pecans)
  6. Peanuts
  7. Wheat
  8. Soybeans

These eight foods, and any ingredient that contains protein derived from one or more of them, are designated as “major food allergens” by FALCPA. 

**********************************************

Note these are food allergens, while what celiacs develop are mostly food intolerances.  It is possible we may be more likely to develop food intolerances of foods we eat a lot of regularly.  That is why some people do a rotation diet, to avoid that possibility.  Unfortunately, there are very few tests for food intolerances.  So we need to test ourselves with an elimination diet.

Before doing that though, make a good trial diet of only whole foods for a month or 2.  Any processed food is more likely to cause digestive problems than a whole food is IMHO.

You might also find Betaine HCL capsules helpful before or after eating.  They generate some hydrochloric acid in the stomach which can aid digestion.

Link to comment
Share on other sites
Ennis-TX Grand Master

I suggest a food elimination diet, removing all processed food period. Then try eating certain raw whole foods and on a process of elimination. This way you can figure out what food is causing your issues. I found keeping a base diet of salad no seasoning, or dressing, with a plain protein and then ever few days trying a different "Side Food" then recording how I felt. It was bland in a pain in the ass but found my food issues over a few months. Note you have to remove foods for a full week then try it consistently 1-2 days then remove it again for a good idea. Simple, annoying, but very efficient method for finding your intolerance.

Link to comment
Share on other sites
Awol cast iron stomach Experienced

As others said above all the above are factors.

After 31/2 years gluten free I underwent a gluten challenge.

Once gluten destroys me I am more susceptible to other havoc wreking. As they stated above no processed stuff including gluten-free items now as Ennis said. I removed many of the top 8 allergens and added in slowly one at a time to test. 

Besides gluten, corn, and cow dairy are problems for me. Corn is almost as many multi symptoms for me as gluten. Cow dairy gives me muscle pain and joint inflammation. 

Gluten and corn are zonulin issues for me big time!

All the posters gave great advice.

Good luck 

Link to comment
Share on other sites
Jmg Mentor

Jammy everyone above has nailed it so just wanted to post some mutual support! 

One suggestion. When making any changes to diet Be sure to keep a food journal, jnote everything your consume, the time and how you feel. It may be a pain but it's a really powerful tool in helping to track down things which are a problem. It helped me identify gluten in the first instance and it helped me track down some rogue gluten that got into my diet later. 

Either a small notepad would do the trick or maybe use your smartphone if y have one and then you can keep the copy on the cloud for easy reference later. 

Best of luck!

Link to comment
Share on other sites
Ennis-TX Grand Master
10 hours ago, Awol cast iron stomach said:

As others said above all the above are factors.

After 31/2 years gluten free I underwent a gluten challenge.

Once gluten destroys me I am more susceptible to other havoc wreking. As they stated above no processed stuff including gluten-free items now as Ennis said. I removed many of the top 8 allergens and added in slowly one at a time to test. 

Besides gluten, corn, and cow dairy are problems for me. Corn is almost as many multi symptoms for me as gluten. Cow dairy gives me muscle pain and joint inflammation. 

Gluten and corn are zonulin issues for me big time!

All the posters gave great advice.

Good luck 

Welcome Comrade, to the Gluten, Corn, and Dairy free life. If you need help tell me, I am highly allergic to corn so I know with a gluten-free and corn there are major restrictions. Like in baking powder the only safe one is Heinz as it does not use corn starch, most processed foods even the gluten-free ones use plain which has corn starch. Enjoy Life is you friend there free of corn. I can help you out with other products like chips, get Beanitos, taste like corn chips but corn free. I have learned much over the years and sometimes it still sneaks up on you. Like I just had a major reaction to a jam that seems to have corn in one of the processed ingredients. I have had to make many things from scratch to substitute in addition. Glad you tracked it down, and once you get a hang of the diet it is quite easy.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Jammy27 Rookie

Thanks everyone for your advice, it's much appreciated.

I have been eating some processed foods like gluten-free biscuits since my diagnosis which I'm now cutting out, so hopefully that helps. I've been keeping a food diary, so will definitely keep that up. It seems as if, after diagnosis and coming off the tube, my digestive system cannot tolerate 'crunchy' or stodgy foods very well.  I seem to tolerate soft foods though, so am going to try sticking to those from now on. Has anyone else experienced anything similar or have any ideas why this might be the case? 

Link to comment
Share on other sites
tessa25 Rising Star

I only get better on a bland liquid diet. It's easy on my damaged intestines. As long as my blood test numbers keep going down I don't question it.

 

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,151
    • Most Online (within 30 mins)
      7,748

    Debbie Shetrit
    Newest Member
    Debbie Shetrit
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • CatherineWang
      I'm pretty sure that in stores, you can find plenty of gluten-free options. But they are usually a bit more expensive.
    • cristiana
      Hello @BunnyBrown and welcome to the forum. I cannot say that I have had the procedure you describe, but recently I did have general surgery and was routinely intubated.  That pain was what troubled me most after the operation, far more than the operation site.  It took a few days to really settle down, I was quite badly bruised. It was taking so long I was a bit concerned so asked the question on another forum. A few patients came back to me and said they had suffered the same.  I imagine in my own case possibly the throat got bashed about a bit,  maybe they had difficult inserting the tube?  I've suffered with a painful throat post-endoscopy too, but never as long as the intubation pain.   I hope you will be feeling better very soon.   PS BTW - love the name!  I saw this today in an Easter display in a shop and your name reminded me of it.🙂  
    • cristiana
      This wonderful, Anne. I think you have a point about why people disappear off forums.  I found the first few years post diagnosis a real struggle and frankly wondered if I would ever feel better (not to dishearten people, but just to say it can take a while longer for some folk to heal).  However, once my antibodies were back within normal range it really has made a big difference to my health.  I've chosen to stick around because I'm a Mod, otherwise I might have been one of those that disappeared, too!      
    • Exchange Students
      Yes absolutely, we work with all public schools and some private schools in all 50 states.
    • Scott Adams
      Just a quick question, can the host live in any state in the USA?
×
×
  • Create New...