7 weeks in still having symptoms

[joe3530]

Hi all, after a blood test showing TTG levels >170 and anti-gliadin being 3x normal I opted to go gluten-free after a poor experience with a nurse practitioner pretending to be a gastro doc (who shouted over my concerns and ordered tests I had already taken and had proof of). It's been a long past 6 months with what started as some kind of food poisoning or severe diarrhea and a fever on my flight overseas and got worse once I was there. I "Recovered" from the severe symptoms but never felt "hungry" ever again and had awful reflux and gas bubbles which made me feel like a balloon constantly. I had sharp pains in the liver area for a few seconds due to how much gas was built up. I had excessive faltuence off and on and started becoming fatigued quite easily anytime I even set foot in a gym. The fatigue would go away for a week or two then come back. I got the "brain fog" that people talk about and it nearly cost me my job due to how out of it I was constantly. This would wax and wane before I had any idea what was going on so eventually I sought help. Months later (first sick October 2018) after a whole week I spent in bed just hoping it would go away and many many tests (a ton of money), parasites (negative), h-pylori (negative), every hepatitis (negative), iron (I was low somehow for a 24 y/o male who eats red meat and 5 eggs daily) lead to discuss celiac testing after many other things that I've paid for but forget were ruled out. I also had mildly elevated LFTs (could be due to lifting weights as GGT was normal). I've always been healthy/fit/extremely active prior to all of this and have had great luck building muscle and balancing a diet with lots of whole foods for many years now with very few GI symptoms over my lifetime.

Instead of returning for an attempt to an endoscopy, my PCP offered me a chance to try dietary elimination as official diagnosis. So here I am. 7 weeks and a day in and I still find it difficult to go the gym after a 9 hour day at work (office type engineering job that is in no way physically exhausting). I can use some willpower to go but its not the same. I still don't really feel "hunger" but eating is ok as I just remind myself its time. I am definitely eating enough, typically ~3000cals/day with plenty of good solid foods. Just today I brought 1lb of steak tips and a big bag of rice with franks to season. I know when something "gets me" because I get very tired the next (same?) day or so and then this bizarre itchy thing on my right inside forearm happens with no rash followed by some (new symptom) water retention. Sometimes constipation or a bout of diarrhea. I can't pinpoint my reaction time and often fail to identify what it is that is getting me because my symptoms keep changing. I had some pretty bad reflux around week 2-4 that caused difficulties during a job interview but that seems to be clearing up. I still burp up gas at odd times that I never used to but again, seems to be clearing.

Here's the weird part. The first 1.5 weeks of this I appeared to show significant improvement. My stomach rumbled with hunger once again (seriously I was so happy) and I was returning to easily managing lifting 5x a week without many issues. I felt and looked better almost immediately. Then the reflux came back, then the fatigue, the no "hunger" feeling, gassiness, itch thing on my arm. Thank god the brain fog is gone. I'll admit I've eaten some crap foods like gorging on a bag of gluten-free flamin hot cheetos several times, Utz gluten-free BBQ chips (do NOT buy these if you value your life) just to see what happens and it never goes well the next few days but I can't tell if its that or if I am being careless elsewhere. Every "Gluten free" whey protein I buy is a complete sham and ALWAYS gets me. Other dairy stuff I seem to be ok with though (chobani anybody?) and a certified gluten-free protein whey/casein bar I found at whole foods.

I've done a lot to avoid cross contamination but I'm worried I haven't been careful enough with this aspect.

I did a full thyroid panel and it appeared normal (TSH was 2.3 - I read into this a bit and it seems people think this is too high?) and also checked my testosterone levels which were good and high. Have my iron levels dropped again? I had a follow up test before I went gluten-free and I had somehow fixed my iron with iron supplements so I doubt that has happened again... I don't know when I actually "caught" (developed) celiac but it definitely wasn't too long before the symptoms started. Does anyone have research regarding this?

1. The oven I own (I am trying to make my entire kitchen gluten-free but still isn't perfectly clean) I always put the meat I cook on a baking sheet with tinfoil - does this matter? There are a lot of crumbs on the bottom down there....

2. The microwave at work is pretty gross but if I dont touch the inside of it and don't eat with my hands and wash before and after I am ok - right? (Cleaned my home microwave thank u)

3. My keyboards on my own pc at work, all other work pc's (I use many) and my work laptop/home computers are all definitely contaminated with many many crumbs as myself and others frequently eat over them (especially before this whole mess). Is hand washing before touching eating sufficient to cover avoiding CC here? I am definitely a chronic nail biter since age 6 so I think this is what might be getting me...

4. Do I really need to throw out half my kitchen appliances? I have some pots that have some burn residue due to oopsies while cooking pastas in the past. I also have 2 non-stick pans (lightly scratched but I got them recently within the past 3 months and don't recall cooking anything with gluten in them that are now only used gluten-free.

5. L-carnitine, I am willing to try as the clinical results I read sounded fairly promising and worth a 20$ risk. Please recommend me a brand that is (legitimately) gluten-free?

6. Have I lost my mind and am I being too careful?

7. If your antibodies were higher than someone else's on the blood test - does that mean your damage/symptoms are going to be worse than someone who is say, a low positive?

8. When should I retest my antibodies?

This dip in my energy is slowly driving me insane, I used to have no issues going to the gym 2x a day on occasion typically 6/7 days a week for YEARS sometimes spending 3 hours in there with friends of mine doing various stuff. I'm not old but man do I feel old.

[tessa25]

25 minutes ago, joe3530 said:

1. The oven I own (I am trying to make my entire kitchen gluten-free but still isn't perfectly clean) I always put the meat I cook on a baking sheet with tinfoil - does this matter? There are a lot of crumbs on the bottom down there....

Vacuum the crumbs and use the self clean cycle on your oven.

25 minutes ago, joe3530 said:

 

3. My keyboards on my own pc at work, ... Is hand washing before touching eating sufficient to cover avoiding CC here? I am definitely a chronic nail biter since age 6 so I think this is what might be getting me...

Wash hands before nail biting or take up gum chewing instead if that works.

25 minutes ago, joe3530 said:

4. Do I really need to throw out half my kitchen appliances? I have some pots that have some burn residue due to oopsies while cooking pastas in the past. I also have 2 non-stick pans (lightly scratched but I got them recently within the past 3 months and don't recall cooking anything with gluten in them that are now only used gluten-free.

Clean off the residue completely then put in dishwasher if they are dishwasher safe.

25 minutes ago, joe3530 said:

5. L-carnitine, I am willing to try as the clinical results I read sounded fairly promising and worth a 20$ risk. Please recommend me a brand that is (legitimately) gluten-free?

Buy a Nima Sensor to test food you are unsure about.

25 minutes ago, joe3530 said:

6. Have I lost my mind and am I being too careful?

You have not lost your mind.

 

7. If your antibodies were higher than someone else's on the blood test - does that mean your damage/symptoms are going to be worse than someone who is say, a low positive?

No.

25 minutes ago, joe3530 said:

8. When should I retest my antibodies?

This dip in my energy is slowly driving me insane, I used to have no issues going to the gym 2x a day on occasion typically 6/7 days a week for YEARS sometimes spending 3 hours in there with friends of mine doing various stuff. I'm not old but man do I feel old.

At three months is a good first test to see if you are on the right track.

If you want to feel better sooner it would probably help to try a simple bland diet of whole foods for a while. No crazy crunchy spicy things.

 

 

[cyclinglady]

Because you probably have celiac disease, it would be prudent to have your thyroid checked for antibodies.  Once you get one Autoimmune, you can develop more.  Your TSH is just fine.  I would be happy with at result.  And it is hard to say if your thyroid is the cause for any of your symptoms because autoimmune disorders have symptoms that overlap.  Another reason to get your thyroid antibodies checked now or in the future (tuck that information away for future use).  But first address celiac disease.  One thing at a time.   It might the the root cause of everything for you.  

Do not use a dirty microwave.  That is my own personal opinion.  Instead of spending $20 on a supplement, buy a thermos.  I sent my kid off to school or we attend a sporting event with a hot meal prepared in a clean appliance.  You will avoid cross contamination and maybe some disgusting bacteria too!  

Seven weeks in is such a short amount of time.  Be patient.  Maybe consider finding a GI or GI practice that has a celiac-savvy doctor.  You might get better support.  

Finally, I am pretty active.  Listen to your body.  Take it easy for a while.  Gentle exercise until you fell well for weeks and not just a few days.  It takes time to heal.  Soon you will be back to your old workout routine.  Two months after my diagnosis, I fractured my back doing nothing.  Yep, I had developed osteoporosis as a result of untreated/undiagnosed celiac disease.  You can imagine how bad I felt giving up my bike and running for months and months.  But time quickly passed.  

You can tell if you are healing if your iron levels improve without taking supplements.  I took iron for just a few months (I was very anemic).  When my levels held without supplementation, my doctor and I knew the gluten-free Diet was helping!  

Follow-up testing recommendations:

http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/

Hang in there!