Asymptomatic

[Matt C]

New to the forum and saying hi.

I spent 38 years on a fairly high gluten diet with no consequences or any symptoms that would suggest Celiac disease. Late last year I noticed a bit of redness around my nose and went to get it checked out. Blood tests indicated I was likely Celiac and an Endoscopy confirmed this. I have no family history of the condition or suffered any other side effects from eating gluten. I've been eating totally gluten-free for about 3 months and I notice my energy has been lower since the switch.  

This might be the wrong area for this post, but I'm just curious if anyone else had a similar path?

[ravenwoodglass]

Welcome to the board. What are you typically eating? It is advised that you start out with as much whole unprocessed foods as possible to avoid cross contamination (CC). It also isn't just what we eat but how it is prepared that can be a bit to get used to. If you haven't already there is a 'Newbie' topic at the top of the Coping section that will give you a lot of good information to keep you safe. It is possible you are still getting small amounts of gluten which could be impacting your energy levels. Has your doctor checked your vitamin and mineral levels? It isn't uncommon for us to need supplements until we heal.  I expect some other folks will have more suggestions. Celiac diagnosis is tough at first when you don't seem to have any symptoms. You may however notice relief from things that you would never have thought to be related. I hope you are feeling better soon.

[GFinDC]

Hi Matt C,

What you describe is known as "silent celiac" disease.  Basically having celiac without any obvious GI symptoms.  There are some forum members who have silent celiac, but I am not sure of they visit often.

A problem with silent celiac is knowing when you have been glutened.  Most of us know by our symptoms when we have been "hit", but for a silent celiac that built-in warning is missing.  So it's tougher to avoid minor cross-contamination in foods.

Your fatigue though is not unusual.  Recovery from celiac damage can take a year or more.  People can be low on certain nutrients like B-vitamins, D, copper, iron, selenium (trace minerals), and that can severely impact health and energy levels.  Celiac impairs the ability to absorb nutrients so it can be helpful to add supplements at first.

Also it helps to stick with a whole foods diet and avoid processed foods.  Generally a good plan is not to eat anything with more than 3 ingredients for 6 months.  This makes it easier to shop for food (reduced label reading time) and you will be eating more simple foods.  Less chemical waste for your possibly impaired liver to process.   Celiac can cause liver numbers to rise but they are usually temporary and the damage is repaired after going gluten-free.

Welcome to the forum and feel free to ask questions!

[RMJ]

I am basically a silent celiac but definitely feel better now that I am gluten free.  I also no longer have troubles with nausea.  My GI didn’t think that was a symptom, because I told her my stomach gets upset when I am stressed, but I think it was.

[pikakegirl]

Silent Celiac as well. Took years of recovery for me. Malnutrition took its toll on my organs and nervous system as well. Getting the right medical help was difficult because of lack of doctor knowledge. Energy came when I found I was not metabolizing many vitamins even though I was supplementing. Once I took the l-methy form of folic acid my energy returned as did my positive mood.

[TGK112]

Also considered myself to be asymptomatic. Doctor had me tested for celiac to rule it out as the cause of my osteoporosis. I was shocked and thought it must be a mistake when the results came back positive. But then I realized  that it explained the weight loss which I had the previous year. Once I was gluten free, I also realized that I was no longer getting canker sores in my mouth, mysterious skin rashes, or muscle spasms in my back. So I guess that I wasn't as asymptomatic as I had thought. To this day-- seven years since diagnosis-- I have never experienced "getting glutened" , although I'm sure I have slipped along the way. In many ways I feel lucky,  but in other ways it makes watching what I eat more difficult.  

[Z4CH]

Ok, So I'm still trying to figure out if I'm celiac and am in NO way an expert on the disease. But I have been a gym rat for over 5 years and can speak to how dietary changes affect energy levels. 

I would typically go pretty heavy on carbs during the winter to bulk up, then start cutting pretty heavily around April to get ready for the summer. The energy loss you feel may be related to a decrease in carb intake. It happened to me every cutting season. The typical weight I would lift would drop by about 10-15% during cutting season. Right now I am gluten free, dairy free, and egg free. Same drop in energy as I would usually get during cutting season. Right now I'm trying to find higher carb foods that are gluten free. Any advice from the celiac veterans on that? I'd like to know too because I've dropped 30 pounds in a month and half and need to stop losing weight now lol.

So the point is: if your diet is neither high in fats (nuts/beef/fish) or high in carbs (it was always whole wheat bread for me before going gluten free) you are going to feel the energy drop.

[Matt C]

Thanks for the input everyone.  It seems that most found their Celiac to be the culprit for some other ailment... but not in my case. I felt perfectly healthy UNTIL I went gluten-free.   I tried to take diagnosis as an opportunity to move towards a whole food diet, but this proves to be difficult when I'm desperately trying to replace the now forbidden pizza, cookies and cereals). Time to put down the Kinnikinnicks I guess..

[GFinDC]

On 9/9/2019 at 8:15 AM, Z4CH said:

Ok, So I'm still trying to figure out if I'm celiac and am in NO way an expert on the disease. But I have been a gym rat for over 5 years and can speak to how dietary changes affect energy levels. 

I would typically go pretty heavy on carbs during the winter to bulk up, then start cutting pretty heavily around April to get ready for the summer. The energy loss you feel may be related to a decrease in carb intake. It happened to me every cutting season. The typical weight I would lift would drop by about 10-15% during cutting season. Right now I am gluten free, dairy free, and egg free. Same drop in energy as I would usually get during cutting season. Right now I'm trying to find higher carb foods that are gluten free. Any advice from the celiac veterans on that? I'd like to know too because I've dropped 30 pounds in a month and half and need to stop losing weight now lol.

So the point is: if your diet is neither high in fats (nuts/beef/fish) or high in carbs (it was always whole wheat bread for me before going gluten free) you are going to feel the energy drop.

Hi Z4CH,

Rice is all carbs.  Rice is pretty useless for minerals or vitamins though.  It's kind of like eating sugar.  Sweet potatoes would be much better for nutrition.  There is a recipe for  gluten-free peanut butter cookies somewhere.  It just has peanut butter, egg and sugar and baking powder.  They taste great, better than regular peanut butter cookies made with flour.  Maybe someone will provide the recipe.

[GFinDC]

4 hours ago, Matt C said:

Thanks for the input everyone.  It seems that most found their Celiac to be the culprit for some other ailment... but not in my case. I felt perfectly healthy UNTIL I went gluten-free.   I tried to take diagnosis as an opportunity to move towards a whole food diet, but this proves to be difficult when I'm desperately trying to replace the now forbidden pizza, cookies and cereals). Time to put down the Kinnikinnicks I guess..

Hi Matt,

If you can stick with the whole foods diet for 3 months you will heal / recover faster IMHO.  Then you can add one new food a week to your diet and see how it goes.  It is a good idea to keep a food journal including how you feel. Like Monday ate chicken, broccoli, peas, and sweet taters today.  Feeling great.  Tuesday ate beef, eggs, brussel sprouts and sour patch kids, feel like crap.  After a while trends can show up.