New to the site, diagnosed with Celiac

[NJJOE640]

Hello everyone my name is Joe. I was diagnosed in November with Celiac as well as Hypothyroidism. I'm 34 and from NJ. 
 

It's been a little bit of a roller coaster and a lot of trial and error when it comes to gluten free eating  it overall I feel a lot better with a gluten free and dairy free diet. (Milk allergy too) 

I just wanted to say hello and see what others are experiencing with celiac disease. I have days or weeks when I feel absolutely great and other times I feel awful with muscle aches, headaches and stomach issues. I feel like this is all part of celiac. I am on 75mg of Levothyroxine as well as numerous supplements since I was in rough shape when finally diagnosed. 
 

-Joe

[trents]

Welcome to the forum, @NJJOE640! Can you be a little more specific about your question. Are you asking if other celiacs are experiencing this same roller coaster effect with their efforts to eat gluten free?

[NJJOE640]

Thanks for the welcome @trents  Yes, sorry I should have been more specific as to if it is normal or not to feel like a roller coaster when it comes to being on a gluten free diet. I feel like I ride high for a week or more then back down for a week or so. I would like to see what everyone's "normal" is. Thank you! 

[trents]

It took my wife and I about two years to get a feel for how gluten is hidden in the food supply, particularly in processed foods. It can be disguised in terminology and it can show up in places you would never expect like soy sauce, Campbell's tomato soup and even pancake syrup. In time you develop a sixth sense about all this - as it were. Then there is the whole phenomenon called "cross contamination" or CC where something naturally gluten free gets contaminated with gluten through incidental contact with wheat, barley, or rye in the growing stage, during processing, manufacturing or preparation. And then you go to a restaurant and order something that is gluten free but it gets cooked on the same surfaces or in the same post along with something that contains wheat. For example, that gluten free pasta you order at Olive Garden gets cooked in the same pot of boiling water as the regular wheat spaghetti noodles or the fries at a fast food place get cooked in the vat of oil as the breaded chicken nuggets. All that sort of stuff. Wheat starch can be used as filler in pills and meds, etc.

But let me be sure what you are asking. Are you saying you find it hard to stick to the gluten free diet and so are inconsistent or are you saying you think you are being a good boy and consistent with your gluten-free diet but some weeks you feel like no matter how careful you are you don't feel good?

Do you eat out a lot? This is the biggest mine field for eating gluten free.

This might be helpful: 

 

[NJJOE640]

I have been good as far as I know and as careful as I think I should be. I do eat out a decent amount being that I am on the road frequently for work. My go to thing is an omlette which seems to be fine but I think sometimes potatoes or hash browns can give me a problem. I can imagine that the are most likely cross contaminated with other fried foods with gluten. I stay away from all processed meats it's tough to find decent things to eat on the road it seems like  when it comes to diners to to go places  

Is fatigue a common symptom when glutened? It seems like it can take days or even a week if I feel like I messed up and had gluten in my diet. 
 

 

 

[trents]

Yes, fatigue is a classic symptom of getting glutened. Sounds like you are getting cross contamination on a regular basis as I'm sure at diners they are cooking everything on the same grill. You might try asking if they could cook your stuff in clean pans because you have a medical condition that requires you to avoid even traces of wheat.

[GardeningForHealth]

Since you are taking levothyroxine, that means you were diagnosed with hypothyroidism too, and this can also be responsible for fatigue. I've read for years in forums that people on levothyroxine complain that it doesn't do enough for them. Fatigue is very common in autoimmune disorders in general. You know what they say about autoimmune conditions (such as Celiac)--when you have one, you often get others eventually. 

[NJJOE640]

Yes I was diagnosed with hypothyroidism as well. Which seems to go hand in hand with the celiac from what my doctor says. It seems like if I mess up and eat gluten or eat contaminated things such as potatoes or hashbrowns from a diner then I'm out of commission for atleast 3-4 days. I get a bad headache that won't go away then I bounce right back to normal like a light switch after the 3-4 day period. 

[PA Painter]

I am getting the rollar coaster ride too! I don't eat anything that should have gluten but I still get, neuropathy, joint pain, headaches, cramps and twitches. It has gotten to the point where all I eat it is grilled chicken and mixed veggies every day for diner. This morning all I had was an oat milk/ isolate whey/ instant coffee/ smoothie and I could hardly get through the day. I have yet to eat anything else so I know it is from the smoothie. Nothing in the ingredients indicates I should be feeling like this. I keep getting what seem to be reactions without ingesting gluten. I had to completely eliminate the "gluten free" junk food. It was messing me up almost as bad.

[trents]

28 minutes ago, PA Painter said:

I am getting the rollar coaster ride too! I don't eat anything that should have gluten but I still get, neuropathy, joint pain, headaches, cramps and twitches. It has gotten to the point where all I eat it is grilled chicken and mixed veggies every day for diner. This morning all I had was an oat milk/ isolate whey/ instant coffee/ smoothie and I could hardly get through the day. I have yet to eat anything else so I know it is from the smoothie. Nothing in the ingredients indicates I should be feeling like this. I keep getting what seem to be reactions without ingesting gluten. I had to completely eliminate the "gluten free" junk food. It was messing me up almost as bad.

About 10% of celiacs are also intolerant of the protein "avenin" in oats.

[PA Painter]

That's worth looking into.  Thanks! I hope that's not it. I go through a lot of oat milk. The only thing new was my instant coffee. I switched to NesCafe's "Iced" version. It's supposed to dissolve easier so I would assume that it has been processed more than the regular instant coffee.