Day 7

[binkman]

So far, so good, I guess.

I've been gluten-free since the day before my endoscopy (when I didn't get to eat anything)—seven days now. Since then, some of my symptoms seem to be improving, but one week is probably not long enough to establish a trend.

Strangely enough, its the neurological symptoms that seem most resolved. The tingling and burning in my feet is gone and left almost immediately after I stopped consuming gluten.

My ruq and stomach pain has been easing every day, with the exception of yesterday, when I tried some cheese in a (gluten-free) quesadilla. I think I'll have to give dairy some time. But at least my appetite is coming back.

Still not sleeping through the night, and still waking up in a panic, but I'm hoping that will pass. The brain fog seems not to have recurred for a few days, though. My D has become C, and now seems to just be crampy alternation.

I'm still losing weight, but maybe the rate of weight loss has slowed down to 2 lbs in the last week. I'm still most nervous about this symptom. In the last couple of days I've been battling sudden bouts of extreme fatigue and fast heart rate. I'm not sure if this is gluten withdrawal (I definitely don't have any cravings!) or because my GI put me on metronidazole for Blastocystis.

This forum has been of great help in dispelling anxiety about my many symptoms. Thanks everyone!

[nvsmom]

I could be a bit of withdrawal.  For me, it wasn't so much that I craved gluten, it was just that I felt bad.  LOL  Withdrawal often includes fatigue, headaches, weakness, and a really bad mood.  The fatigue will probably pass within a week.

 

I'm glad some of your symptoms are starting to resolve already!  That's really good.  Symptoms may make a short comeback in the next few months so try not to worry when it happens.  As long as the overall trend is towards feeling better, you are doing okay.  Things will probably be fairly inconsistent over the next 6 months but they should be improving overall.

 

Dairy can be dicey for the first 6 months.  If you are going to eat dairy, try to stick to products that are low in lactose like hard cheeses and cream.  Buy lactose-free products if you can, and try to limit the amount you eat.

 

Keep it up!

[binkman]

Day 14!

 

The weight loss has reversed itself and I am now gaining at almost the rate I had been losing. 

 

But it's not been a steady improvement. I wonder if I glutened myself recently by accident, or if I am just having a relapse, but after improving through day 12, the last two days have been rough with C&D, and once again the burning feet have returned. No muscle fasiculations, though. I accidentally had some cheesecake two nights ago,   though it was clear that dairy was causing a problem. I even had it at a dedicated gluten-free restaurant/bakery, so no chance of CC there. How stupid of me. I just wonder if the return of symptoms might be a result of the dairy?

 

All sorts of weird new things are still happening to my body. I even have an itchy little wart appearing on the middle finger of my right hand. 

 

I discovered by ruq pain, which was a huge red flag for my primary care doc, was actually musculo-skeletal. It came back after a day in the car and I was able to 'pop' something back into place with some ab stretches. It hasn't bothered me since, how bizarre.

 

Nevertheless, my energy level is the best it has been in the last two weeks, nvsmom was right! And even though I seem to be suffering a symptom relapse of some kind, it's nothing like the month it took for me to get my diagnosis. Here's hoping the remission continues!

[cyclinglady]

Congratulations! So glad that you are seeing improvement.

Relapses for no reason are common for those with celiac disease. You can have a lot of "off" days as you continue to heal. We tend to blame gluten, but often it can be another food intolerance or who knows? Remember, there is a steep learning curve in avoiding gluten, so expect mishaps.

I had a tough time consuming Xantham gum that is found in gluten-free breads my first year. It never bothered my gluten-free husband, so I blamed my damaged gut. it does not seem to bother me now.

[cyclinglady]

Cream cheese still has lots of lactose. Try hard cheeses if you are going to test dairy. Better yet, avoid it completely for the first few months.

[binkman]

I have been having a bit of 15 month-old cheddar and 24 hour yogurt most days, but maybe I will stop altogether for the next week and see if that makes any difference.

[GF Lover]

Just want to add a few thoughts.  Healing takes time, alot of time, more time than you would think.  I'm talking possibly years before all pre-celiac symptoms resolve if they all do.  Many find that there is permanent damage from the Autoimmune system attacking and can include all parts of the body.  You should try and review your progress at  monthly intervals if not longer.  Day to day and week to week fluctuations are to be expected and not a good measure of progress.  If your going to go Dairy free then do it completely.  Like Cycles said.  Don't even try to introduce dairy back for a good 3-6 months. 

 

Binkman, I hate to see you try and hurry this up.  Your body is damaged !!!  It needs time to heal and to start absorbing nutrients.  Only then can the body work on repairing other areas. 

 

Don't worry about things like a wart.  Spend your energy making 'only' whole food meals.  Cut the spices.  Cut any processed foods.  Cooked vegies are easier to digest in the beginning.  Please do not eat out for some time if you can avoid it.  I'm assuming you've completely gone over your kitchen and made appropriate changes.  Don't forget to check things like medications, pet foods, personal products that may get in your mouth ie: lip balms, shampoo.

 

You know, you may have been sicker than you thought before your dx and only experienced increased symptoms for a month.  Some of us went 20 years without a dx.  The symptoms start innocently enough then one day you are in fact dying. 

 

I'm not being critical of you at all.  Please know that.  I just want you to really wrap your head around 'being a Celiac'.  This is a life altering disease and you will have it for the rest of your life (barring any future cures). 

 

Good Luck to you.

 

Colleen

[binkman]

Thanks gluten-free Lover,

 

I have indeed made a lot of changes in the house, and spent quite a lot of time and money replacing a lot of cookware and food, cleaning cabinet surfaces, countertops, etc. The only reason I went out was because the restaurant was a dedicated gluten-free restaurant.

 

I was hoping that I'm not too bad off, because I've only been having symptoms for about 6 months and none of my blood work showed any nutritional deficiencies. But I realize it can be more complicated than that.

 

I have been making only 'whole' meals, even staying away from high FODMAPs and processed food. I'm cooking a lot out of my garden, as I usually do. I'm a very goal-oriented and results-motivated person. I hope to get back into my running habit by the end of fall and I'm not even tempted to eat anything I think might slow down that recovery. I've only been using spices I know to be gluten-free. Can any spices, in general or in particular, be detrimental?

 

I'm not rushing, just ambitious and optimistic. Thanks for the advice!

[GF Lover]

Spices generally.  You don't want hot sauces or things like chili power.  Things that are more difficult to digest and that may irritate the gut.

 

It sounds like you are off to a great start .  Those with the best attitudes have a much easier time transitioning to this new life.  It's very important for you not stress out your body and/or mind.  Stress itself can activate the autoimmune system.

 

It really is refreshing to see a new Celiac have such a great attitude.  I'm pretty confident you will do just fine

 

Colleen

[binkman]

Just wanted to share my experience so far.

 

AFAIK, and I've been militant about it, I've been gluten-free for almost 9.5 weeks. The first couple of weeks were tough, and it took a while to get my energy back. At its worst, I couldn't hardly even cook for myself but I'm feeling pretty much back to normal now. I've even gone a little more liberal with my FODMAPS and haven't had any trouble really. I have a little bit of milk every couple of days. Before it would tear me up inside, but recently I've been tolerating it with no noticeable discomfort.

 

The only energy deficit I notice now is when I'm running. Before the whole celiac crisis began (starting slowly this winter), I was running ten miles in one go at a pace of about 7:30 min/mile. I took the spring and early summer off, because I was feeling so poorly, but I'm still only running about 9-10 minute miles, and I can only run about 3 miles at a time. Some of that is just loss of conditioning, but I hope it starts improving. Decreasing capacity during high energy workouts was one of the first indications that something was wrong. It's pretty discouraging to have to start back from such a setback. I'm trying to eat as much healthy, whole food, and especially protein and carbs as I can to maximize nutrition for my muscles. I'm sure I'm still not absorbing at more than about 60-75% my pre-celiac disease rate.

 

For the past couple of months I've been having cold symptoms that are coming and going. I think its just something that was making the rounds among some of my friends and work colleagues a few months previously that I just caught later than they did. I have been having some lymph nodes lighting up in my neck and one in an armpit. Hopefully that will resolve itself in a few weeks. I had some discomfort taking deep breaths after a run yesterday, maybe because something has settled in my lungs, maybe because of the back pain, and maybe because it was really humid.

 

The only ongoing issue I seem to be having is a sore back and right hip. Both lower back and middle back pain. Yesterday I stood up and had a sudden incredible sharp pain in my abdomen that eventually resolved itself after about five minutes of slowly stretching out. I understand this can actually be related to nerves in the lower back. I've had some problems with my lower back since I was in high school. I wonder if some of my back pain is not arthritis. I'm only 31, but of course RA is autoimmune, too. My father started to develop RA in his back and shoulders beginning in his early thirties, though, and a case of DH in his mid-fifties led to a celiac disease diagnosis. He has also been borderline lupus since he got a blood test in his 40s. They check the blood levels periodically and he's always right on the edge. So, I assume I have all of my dad's autoimmune problems to look forward to. I might just be getting some of them a little earlier or in a different order. Hopefully I don't get them any worse than him—by the time he was 45 he couldn't lift his arms above his shoulders. He's still pretty active, though, and has always worked manual labor jobs.

 

I have also had a little bit of tummy trouble in the last two days reminiscent of my worst days immediately before my diagnosis, and I have cut out a few food sources that might conceivably contain gluten. But I have taken a lot of comfort in the observations, above, that I should just expect some bad days for a while yet, and know that it's just part of the process.

 

This forum has been such a help on both physical and psychological levels. Thanks so much everyone!!

[LauraTX]

I'm glad the forum has been a big help.  It was definitely number one out of the resources I had when first starting out gluten-free.  I had similar back pain issues like you, and the thing that has helped me the most is physical therapy.  Won't hurt to go see the doctor if yours has gotten worse or has a new kink somewhere, and maybe there is something that can benefit you.  I have lupus causing my arthritis but if you can move around it does help.  I hope you didn't get those genes from your dad!  I don't know which parent to blame, lol.