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Need Advice For My Next Step

Sparky123

By Sparky123
in Coping with Celiac Disease

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Sparky123 Newbie
Sparky123
Posted

Hi guys,

I posted recently about how I was struggling to get better and how lots of different foods were making me ill. Well unfortunately I'm still struggling and need some advice over what to do next.

My background: recently discovered I have a gluten intolerance after being housebound for 2+ years. Had severe fatigue, anxiety, hot flushes during that time. Went gluten free and started to feel better instantly. (Had a celiac blood test which came back negative). First month or so I started my energy started to pick up, but now I'm almost 4 months gluten free and feel awful.

The rest of my family have gone gluten free, and we've overhauled the kitchen to reduce risk of CC. I only eat very plain basic food (porridge with water, plain tuna salad, rice and chicken/salmon). Recently I've had bad reactions (constipation, mild diarrhea, anxiety, fatigue, etc) to so many different foods..

gluten-free bread, Bacon, fruit, tomatoes, cheese, nuts, cereal bars, chocolate, butter.. I could I go on.

Also last week I went I my doctor and he gave me some Pancreatin to see if it helped things. It didn't agree with me at all, competely stopped my bowel movements for a week, and It made me very groggy and unwell.

Sorry this is so long! But I need some advice over what to do next. What tests should I be asking from my doctor? Vitamin levels? Thyroid? I'm getting so frustrated.

Sparky

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cyclinglady Grand Master
cyclinglady
Posted

What kind of porridge? I can not tolerate even gluten-free certified oats or quinoa.

Have you read the threads on mast cell activation syndrome? Worth reading.

Sparky123 Newbie
Sparky123
Posted
  • Author

Gluten free oats. Not sure what else id be able to have for breakfast otherwise. What do you have?

I've never had a bad reaction to the porridge, but I'll probably cut it out just to be sure.

cyclinglady Grand Master
cyclinglady
Posted

Rice porridge, Rice or Corn Chex cold cereal, leftover rice or like, today.....canned salmon on fresh greens!  Yes, for breakfast!  Ate a grapefruit and had coffee.  Then snacked on some sunflower seeds.  

 

I'm allergic to eggs, so they are out for a protein source.  So, I typically have leftover meat (i.e. I cook a bunch of chicken breasts and then freeze them in individual packs).  I can't have milk protein, but  I tolerate soy products very well.  I also try to eat some veggies.  

 

You have to think outside-of-box for breakfast!

cyclinglady Grand Master
cyclinglady
Posted

So often food intolerances or allergies don't cause severe and swift reactions.  Often they are delayed up to 24 hours or longer.  Reactions can vary with the food.  For example, oats and quinoa reactions follow my first gluten reaction of food sitting in my stomach and pain or tweaking in that area.  Later I get muscle aches, fatigue, etc.   Milk,  though will cause my nose to start running/congesting within five minutes of ingesting.  Later, I'll get gas, abdominal pain and cramping and then constipation.  Garlic will cause mouth tingling and then intestinal symptoms all the way to diarrhea and trigger roscea symptoms.

 

Best to keep a food and symptom journal to help you determine your intolerances.  Not all folks have issues with other foods -- just us lucky ones!   :unsure:

NoGlutenCooties Contributor
NoGlutenCooties
Posted

I'm not one for solid food in the morning - I drink a protein shake every morning (Whey Protein).  But my mother (also a Celiac) loves buckwheat cereal.  (don't let the name fool you... buckwheat is in no way related to wheat... it's actually not even a grain, but a fruit)

GFinDC Veteran
GFinDC
Posted

There are a few threads (make that a lot) of threads on what to eat.  You don't have to eat the usual breakfast type things in the morning.  Try eating dinner or lunch in the morning instead.

 

What's For Breakfast Today?
https://www.celiac.com/forums/topic/81858-whats-for-breakfast-today/

What Did You Have For Lunch Today?
https://www.celiac.com/forums/topic/87765-what-did-you-have-for-lunch-today/

What's for dinner tonight chat?
https://www.celiac.com/forums/topic/75238-what-are-you-cooking-tonight/
 

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MGR Apprentice
MGR
Posted

Also some types of bacon, or cooked ham sometimes have hidden gluten among their ingredients- you have to try to get the most natural kinds of these. For breakfast I tend to have fruit and a bowl of natural yoghourt with maple syrup, coffee or tea..

frieze Community Regular
frieze
Posted

hmm....steak and eggs with homefries are gluten free....just sayin'.

Sparky123 Newbie
Sparky123
Posted
  • Author

Cheers for all the food ideas. I'll be trying loads of stuff hopefully in the future once I can tolerate them.

Surely though its not right that I had a bad reaction to taking Digestive Enzymes (Pancreatin)? I'm sure there is something else going on. Just can't figure out what.

cyclinglady Grand Master
cyclinglady
Posted

Sure , you can react to the digestive enzymes. You can react to anything!

  • 2 weeks later...
Sparky123 Newbie
Sparky123
Posted
  • Author

Well well well! Think I'm on the right track now, thought I would post what's happening.

As some of you mentioned, pretty much all of the food I've had bad reactions to are high in histamine. Thank you those of you who told me to look into to (aswell as the PM) I would never have found it out otherwise.

So I'm now avoiding high histamine foods, eating stuff that's only got low levels of it, as well as adding in some anti-histamines into my diet. I'm sure this is what's been troubling me. I've only had trouble with high histamine foods AFTER going gluten free and starting to make a recovery. Do you guys think this is happening possibly because I was unwell for a long time before being diagnosed (2 years) so now my gut is a bit damaged and is being hypersensitive to foods? I guess I'll have to just wait and see how things go.

dilettantesteph Collaborator
dilettantesteph
Posted

I agree with the porriage as the first thing to try.  Also the bacon.  If you try those things and still have problems I have suggestion for where to go next.  Look at this paper for people with continuing symptoms on the gluten-free diet and try their approach.  Open Original Shared Link

 

My son and I seem to need to take it one step further and avoid rice too.

 

I hope that you feel better soon.

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