On my way to a Dx

[krisnkar]

After talking to someone from my local CD group, I found out that the GI specialist I had an appointment with wasn't my best option. He recommended another Dr and I was able to get an appointment with her 4/29. I am also on a cancellation list. That Dr. had her staff person call me back and advise me to eat "some" gluten each day until my appointment. My first question is...how much is enough?

I started adding one small serving of gluten per day last week (1 piece of toast, added cracker crumbs to my chicken and rice, sample of regular pizza crust with my homemade gf crust) and can feel my stomach issues and fatigue returning, which is where my second and third questions come in. Will I only feel sick after eating gluten? B/C I'm noticing more stomach issues after my first meal of the day...even though it may be gf.

And...I know my thyroid is part of the problem right now...but the constant feeling of being tired is starting to wear me down. I'm having trouble getting out of bed in the morning, have no energy all day, and am starting to get depressed about the whole thing. I know I'm just too freakin' tired to be processing this right. I'm feeling like my husband is sick of it too. I know there are some natural remedies at the health food store, but I'm reluctant to start taking anything before seeing the Dr. on the 29th. I just don't know if I can stand feeling this way that long. I'm trying to put on a smiley face at work and at home...but everything is an effort...I'm physically exhausted!! Any suggestions??

[Fifi]

I really feel for you. I am glad I got my dx while I was still sick. I don't know if I could purposely subject myself to that again. It's bad enough when I get glutened by accident. The best thing for you to remember is that after the test you can stop eating gluten. I have been gf for 3 months now and I'm still tired a lot. I know what you mean about your husband being tired of it. My husband still thinks I am making this up, and the Indian doctor that ran my test is in cohoots with me. No one but someone in this forum can really understand how bad we feel.

I will pray that your troubles are over soon. Just hang in there it does get better, and we are here for you!

[ostrich]

[krisnkar]

Thanks fifi and Ostrich. I guess if nothing else this period of time will be the icing on the cake...I will always be able to remember how crappy I feel now before "cheating" in the future.

I'm still worried that I'm going through all this for nothing.

My husband is a great helper around the house, and as I said before we also have a farm. Ours is an active household...so it's even more noticable when I can't keep up. Sitting around is NOT the norm.

As an example...when we got home from work last night he went out to do the farm chores and feed the dogs, while I cleaned up in the house, changed some loads of laundry, and reheated dinner from the night before. After we ate, we filled up the wood bin (we heat with wood stoves), fixed the 4-wheeler, went for a walk, cleaned up the motorcycles and started them up (for the first time after winter), spent some time cleaning up the yard and running around with the dogs, then came in and got ready for bed.

It's not that I'm expected to DO all of that, but its our life to do all that together. I would feel left out just laying around on the couch...which would make me even more depressed.

[Noatak]

I think the amount of gluten you have to eat is not set in stone for every person. I actually went GF before the blood work, by about a week, because I was getting so sick every night, I would wake up 1 pound lighter, every day. By the time I had the blood drawn, I was actually starting to feel better so I already knew I had CD. I failed all tests by a huge amount so it just goes to show that it's anyone's guess as to how much you have to eat. I think a piece of bread in the morning, or sometime during the day, should be enough to trigger your antibodies, considering how badly you feel right now.

As for your thyroid, you should not take any supplements and get tested, with a full thyroid panel, to see what your numbers are. It's most likely related to gluten and could be autoimmune. If so, you'll need to take thyroid hormone and it's extremely important to be prescribed the right amount. I was the same as you, could barely get out of bed in the morning and I am normally a very active person. I am not a couch sitter either so can understand your frustration with the whole thing.

Once you go completely GF and get your thyroid at the right place, you'll be a different person! Good luck to you.

[aklap]

Hi Kris,

You sound a lot like me when I was sick. The tiredness, the brainfog , the depression - it all takes it toll. I remember just sitting at work and just starring off into space - unable to think, concentrate, or motivate. I know where you're coming. It's not a good place to be.

Yes, it maybe all for nothing. You put yourself thru this and testing still maybe inconclusive. However, I think that in the long run, you need to try your hardest to get proper testing done. I started on the gluten challenge - but called it off. I suffered 1.5 years, I wanted no more. If I had to do it all over again - I'd see if I could tough it out. I don't regret the route I've taken, but it does have it's pitfalls.

Hang in there!

Good luck with your appt. I hope you get the answers you need to get your life back! Please, keep us updated!

Bottom line: If testing come back negative [like mine], removing gluten for an extended bit of time would be in order [IMHO]. It sounds like you have been noticing improvements in your trials now - I think that speaks volumes. Sometimes you need to listen to your body.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[krisnkar]

Thank you for the support and info. The link to the CD stories was helpful. It's amazing how many of us are walking around with legitimate physical issues...allowing the medical profession to dismiss us...and make us wonder about our own psychological health as a result. Even more amazing is that in story after story its the person who has to figure out their own problem then tell the Dr what to do.

I know I'm not alone...thanks for that.

[aklap]

You are correct!

That's why places like this, local support groups, etc are important. We get the information [hopefully it's as correct as it can be - we strive for that here] to those that need it. Unfortunately the medical community is lagging a bit when it comes to diagnosing this. Again, if the patient has a bit of knowledge, they can either ask [sometimes push;)] their doctor into looking further into CD as a possible diagnosis...or...can seek out another opinion.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[ostrich]

[krisnkar]