Three Weeks Post-Gluten--Joys And Concerns

[StClair]

I am getting close to three weeks post-diagnosis and gluten-free and am seeing some positive changes, while some concerns are still fully present. On the plus side (very plus!) my migraines have improved dramatically. My digestive problems have improved as well. As long as I avoid certain intolerances, like dairy and sugar, and keep to a balanced diet (gluten-free, of course), I am free from the bloating that has been a constant companion for so many years. Constipation has popped up, but I assume I'm just temporarily adapting to my gut being less irritated/stimulated.

What has not changed, or not changed enough, is the icky fatigue and painful acid reflux. Maybe the reflux is possibly a bit better, but the fatigue has me worried and wondering if I should book a doctor appointment before the one scheduled in three weeks (post h pylori test results). Every day, usually in the afternoon, I start to feel sick with fatigue, even after a good night's sleep. If I can rest or nap, it's not too bad, but working in the afternoon, long car trips, etc, are torture. I go from plodding in the early part of the day to dragging myself forward by the afternoon.

Just wondering how common this is at this point, as I need to decide on whether to bug my awesome doctor or wait three weeks. Also, even though I'm being insanely vigilant, and rewashing everything in the kitchen before using it, I'm paranoid about cross-contamination. How can you tell if it has happened?

[MycasMommy]

Well it may be that the only way you know cross contamination in your own kitchen has happened is a blood test.  It has made my life a bajillion % more wonderful that my whole family went gluten free (inside our home) and the worry of CC is now gone. Its such a safety relief.  They still eat gluten, just when the are out and about, now.  The recovery... feeling 100% better?  It took me about 6 months to stop feeling tired and achy..and I slowly started waking up and every morning I would realize HEY I FEEL FANTASTIC... but that took months to get there. Everyone is a bit different and will take a varying amount of time to feel better BUT BUT BUT... if you do not feel good, you SHOULD bug your doctor. That is why you give him/her your MONEY! It could be that any number of your vitamins are low.. or even that there is some other thing going on. There are some things that are often co diagnosed with Celiac.  Its better to say something.  I think so anyway.

[StClair]

Yes, I wondered why my doctor did not order blood tests to rule out the typical vitamin deficiencies when I was diagnosed. I especially wonder now since other symptoms are improving, but not the fatigue. Also a Dexa scan, since the last one, three years ago, showed osteopenia, and the one before that actual osteoporosis.

You are right that we should feel free to ask these questions. I can do it by message on their mychart page. It would be nice to have needed tests done before the appointment in three weeks.

Thanks for the advice and perspective!

[RMJ]

Could you be anemic?

[nvsmom]

I'm afraid that three weeks is almost nothing in most celiac's recovery.  Your body is most likely still making autoantibodies so intestinal healing probably hasn't even started yet.  Early on, and the first three months is considered to be early in recovery, usually the main improvements are the obvious after dinner bloat and pain, and a few other symptoms like migraines.  Other symptoms like vitamin deficiencies, anemia, pain, and cognitive issues can take many months, to a couple of years, to improve.  Patience is required, but hard to muster up.

 

I myself was convinced that I must have lupus or some other AI because at 3 months gluten-free my pain was worse than ever, and my fatigue and hair loss was no better.  I couldn't believe it was still due to celiac disease even though those who had been gluten-free for a long time told me it could still be celiac disease - they were right.

 

By all means, talk to the doctor about it, but keep in mind you are still recovering and will be for many more months.  You could always make sure he checked the usual culprits: A, D, B12, K, Mg, Ca, Fe, Zn, Cu, ferritin, and check into hypothyroidism which is common among celiacs.  

 

Hang in there

[StClair]

Thanks so much. That is reassuring. Sorry I have to hear it multiple times! As you said you felt at three months, what I am really afraid of is that my long, long undiagnosed celiac has caused something grave, and that my current symptoms belong to that rather than just healing the celiac damage. Hearing your experience, and others, is so helpful, thanks.

[cyclinglady]

It took me six months to resolve my anemia after going gluten free (not to mention healing my vertabrae fractures related to celiac disease) and total of two years before feeling completely normal. Now, just dealing with my thyroid and other hormone issues like so many women!

Hang in there! There is a steep learning curve in avoiding gluten, so expect a few set-backs, but you can get better! I wish you well.

[badcasper]

try super b complex and avoid night shades.  Tomatoes give me extreme fatigue and sting pain pain  with my arthritis. I feel like I have been run over by a freight train for days. might be what your eating for lunch. The super b complex brought my energy level back up almost immediately.

[StClair]

I feel much better after reading these responses. Thank you! Just today I started B-Complex. Hope it works for me like it worked for you, badcasper. Best of luck to all.