Why Is This So Hard?

[Aerin328]

So sorry you're having such a rough time. I am going to PROMISE you this - - it gets SO MUCH BETTER. And it takes time, and lots of research, trial and error. Unfortunately, this is a disease that demands very much of the patient for recovery. It's a pisser. But WELL worth it in the end.

YOu know something, I didn't believe people in the beginning when they said things would get easier, but I can honestly say, it is almost effortless now, second-nature, and I am never sick any more.

Grey,

I have to reiterate this. It can take a long, long time to recover from this frustrating illness. It took me about 6 months before I started to feel "more" normal, and about 10 months I'd say until I at least had days where I had energy for a day (or even a few) at a time. 1 Year being gluten-free has found me better than ever before - the days I feel great now outnumber the days I feel less than great. And I can feel much more time will be needed to be whole again.

But please, read this : Have hope!! It WILL get better. It WILL.

When I read this in the depths of my own suffering I thought it felt like that could never be true. But it was. Healing happens!

A final thought- I found I suffered lesser reactions to many other things. For instance, I thought soy was good for a while but felt much better when I cut it out. I also felt a lot better when I stopped taking a "everything-free" vitamin (not sure what it was, but I feel much better). I even added back in some less than perfectly healthy foods, like clear soda, and that really seems to help with sheer caloric intake. Anyway, I just mean, take the time to experiment, and expect results in both directions, but do not get discouraged. It takes a long time to figure everything out, but there IS light at the end of the tunnel.

God bless, and take heart!

[Karen B.]

I have to agree that it does get better. The problem is your world gets turned upside down exactly at the time when you feel like crud and your brain is fried from gluten.

They told me it would take 6 months for my iron levels to return to normal but it happened in 3 (thanks to some good tips from the hematologist). The sciatica went away within about a month as my nerves began getting enough nutrients to repair themselves. Now, with a few years under my belt, it seems quite normal (for me anyway).

[JNBunnie1]

Thanks for the rsponse. It's all so confusing! I seem to be pretty good on rice, but I'm wondering if I'm reacting to potatoes right now as I seem to have D and other symptoms when I eat them. I've been trying various breads, but I don't eat that much of them, just a sandwich or two during the week. I think I'll drop the bread for a little while and see if that helps.

My gut seems to have gotten pretty badly beat up - it's amazing how you can get used to anything, even constant pain, reflux, and D - without me really knowing. I don't think it can hurt to be nice to it as long as I make sure I'm getting fiber somewhere and other nutrients. I have the Dangerous Grains book, and Peter green's book Hidden Epidemic. I'll

look for Pratt's book next time I can - I've been reading about nutrition (not necessarily gluten-free) a lot lately, so that's a great addition to my list. And I'm off to google the SCD.

My posts are too long - I'm not surprised you missed a minor detail! I think it's because my cat has as yet shown no interest in Celiac disease ... even though she's living the gluten-free lifestyle too ! Thanks for all the detailed repsonse, much appreciated.

A really great place to get fiber is from coconut flour. I think you may be able to tolerate it better than any other flour, and you can bake things with just coconut flour. The only thing is that most of those recipes don't make much, I usually double them. Another very nutritious item is avocados, maybe diced with eggs and a safe salsa, or on top of salad when you can tolerate raw veggies, or with tuna salad.

[grey]

I really, really appreciate the posts on this thread. It's so good to be reminded that even if it takes a while, it does get better. Non-celiacs seem to expect me to be all better by now (2 months) and I'm definately improving, but I'm still struggling. Not that I want pity, but I feel guilty that I'm not better yet, especially since they (friends and colleagues) really do wish me well and want me to be better.

Today I had a OT appt and a two-hour workshop, and I came home and slept for 5 hours, and I'm in a lot of pain now. My ability to focus and concentrate is still really bad, as is memory. This is so frustrating! I weighed myself today and it looks like my weight went down again. On the up side, I do feel like the GI is better when I'm extremely careful. Eating less bread, and bread with 'easier' flours like almond and rice seems to have helped. I'm going to look into coconut flour, too. I had another mini-rxn to potatoes, so I think I *am* having trouble with nightshades as suggested. (sigh) I'm going to look into the clear sodas for calories, too. The suggestions have been SO helpful.

Yesterday went to the supermarket and got so frustrated because they had Mission flour tortillas and no corn. In fact, they only had one kind of corn tortilla and its label was all in spanish and they were pretty old. I found the Hormel Natural sandwich meat (yum, no gluten right on package, and no nitrates!), but not a lot of other things. I think I might just have to designate a day where I drive to a big city and do it all at once in 'real' supermarkets.

I teach, so I don't need to be in the classroom in the summer - although I'm supposed to be publishing and going to conferences (which I'm not). I'm scared about the fall, and whether I'll be able to handle it. It was 14-16 hour days last year and so hard. I'm worried that I'll slow the healing with the stress and running myself ragged. I might look into a course reduction or something to try to make it easier. The neuro. symptoms are so hard with my job, I feel like a big lazy failure. I just can't think straight yet!

I'm really trying to focus on taking care of myself now and trying to find food/products/strategies to make it easier, so that I can get better and STAY well. This board is indispensible for that!

Thanks for all the support and positive wishes and suggestions. (and sorry so long)

grey

[melmak5]

Grey - Tomorrow will be the one month marker of my celiac life and I just recently had to tell my thesis adviser why I still haven't been able to hand in my final draft (because I cannot concentrate long enough to read a page of substance, never mind write one).

Is it possible to take a medical leave, if you have to? I am not saying it will come to that, but you can call your HR/Faculty Resource dept. and ask for LOA, Medical LOA rules, guidelines and benefits. You might even be able to lighten your load, teach at half-time while you are recovering. Just know that there are options might be a huge weight off your shoulders.

[grey]

Melmak, I know how you feel! I can't help wondering how much faster and better my diss would have been done if I could have maintained concentration. Wish I had been dx'd before I was done. Good luck with celiac/thesis combo and I hope you have a reasonable and understanding advisor.

I guess my concern is in letting people know my brain isn't working right and worries about how it will 'look' be as I come up for reviews (tenure, for example!).

I think I still feel guilty about having celiac and its symptoms, especially the neurological ones. Having been told for many years that it was either all in my head, or just stress, has sunk in deeper than I expected. I know it's a disease, but I keep feeling like I should be able to rise above it and push down fatigue and pain through sheer force of will and if Ican't, it's me being weak-willed or not trying hard enough. Academia has a culture of go til you drop (pride in your overwork and pain!), but I imagine this is true for a lot of us w/ celiac, whether it's your job or your family, especially if you've been misdiagnosed at various points. But pushing til you're in the hospital isn't really useful! Misdiagnoses do a multitude of different kinds of damage...

Anyway, although it terrifies me, I'm going to look into my options through HR. Thanks.

grey

Grey - Tomorrow will be the one month marker of my celiac life and I just recently had to tell my thesis adviser why I still haven't been able to hand in my final draft (because I cannot concentrate long enough to read a page of substance, never mind write one).

Is it possible to take a medical leave, if you have to? I am not saying it will come to that, but you can call your HR/Faculty Resource dept. and ask for LOA, Medical LOA rules, guidelines and benefits. You might even be able to lighten your load, teach at half-time while you are recovering. Just know that there are options might be a huge weight off your shoulders.

[corinne]

Grey - I too am on the tenure track; I just finished my first year. LOL about summers off - with 4 research students, grant writing, conferences etc. etc. it's still 14 hour+ days.

I've been gluten free for 3 years and also wish I had been diagnosed sooner. My 7 year PhD probably could have been done in 5 if I could have concentrated. I had a rough time last winter and gave some really bad lectures when the brainfog wouldn't clear and I couldn't think straight which definitely didn't help the teaching evals.

It's tough in academics. I'm afraid that if I admit how I'm feeling, that the tenure committee will go for the jugular.

Anyways, this isn't much help, but just wanted to let you know that someone else is going through similar things.

[gfpaperdoll]

Grey, are you taking B12? You might need to get some B12 shots

also, are you getting enough protein & carbs everyday? I hope you find those Mission Brand White Corn Tortillas because they are really a quick, cheap, carb that goes with a lot of stuff. Just ask your grocery to order them for you, most grocery stores will do that. Get to know your store manager!!!

re nuero symptoms, I would guess that you are DQ1, we all have neuro symptoms

[grey]

Corinne - I'm sorry you're going through it, but it's good to know that I'm not the only one dealing with this situation/ideas. It's one thing w/ the GI or pain, but another with the brainfog. Does your committee know about the celiac at all?

good luck with everything -

Grey - I too am on the tenure track; I just finished my first year. LOL about summers off - with 4 research students, grant writing, conferences etc. etc. it's still 14 hour+ days.

I've been gluten free for 3 years and also wish I had been diagnosed sooner. My 7 year PhD probably could have been done in 5 if I could have concentrated. I had a rough time last winter and gave some really bad lectures when the brainfog wouldn't clear and I couldn't think straight which definitely didn't help the teaching evals.

It's tough in academics. I'm afraid that if I admit how I'm feeling, that the tenure committee will go for the jugular.

Anyways, this isn't much help, but just wanted to let you know that someone else is going through similar things.

[grey]

I give myself B12 injections every other day. But I'm still really struggling with fatigue and pain, like before I started them. I wonder if I need more per dose, or more of something else.

Protein, yes, but I'm not sure about carbs. It's hard to tell. I try to eat rice or polenta with dinner, and I juice or cook a lot of veg/fruit. I will look into ordering the tortillas, that's a good idea, and it would mean the occasional portable food.

I don't know my genetic profile. My mother was tested after I was dx'd, and she doesn't have celiac, but does have DQ1 so it's somewhat likely. My dad is still waiting on his results.

Grey, are you taking B12? You might need to get some B12 shots

also, are you getting enough protein & carbs everyday? I hope you find those Mission Brand White Corn Tortillas because they are really a quick, cheap, carb that goes with a lot of stuff. Just ask your grocery to order them for you, most grocery stores will do that. Get to know your store manager!!!

re nuero symptoms, I would guess that you are DQ1, we all have neuro symptoms

[gfpaperdoll]

Hi Grey, you might have gotten at least one DQ1 from your mom. If she has two gluten genes you got one from her, if she only had one "gluten" gene you had a 50% chance of getting that one.

Same thing for your dad. Let us know what his tests turn out to be...

Since you can have corn, my experience has been that you should not be eating any other grain like the gluten free cereals etc etc. If you are eating them & cut them out you might see your brain fog clear up. for protein I suggest peanut butter & wild salmon plus some other stuff that you can tolerate, I would not eat beef & I also suggest that you read that book "eat Right for Your Blood Type" apply what is right for you, I read all these books & glean some hints from each one. I feel great when I do not eat the foods that are not for my blood type, with a few exceptions which I think maybe because I am also gluten & dairy free, although that author says how bad wheat & dairy is he does not go into being completely gluen free & dairy free.

I guess there is no need to ask if you are using any artificial sugar? Which is a really bad thing I will not go into how bad I think it is but I feel very strongly about this. I think it is so bad that I was so disgusted that I could not get a toothpaste without artificial sugar that I threw the stuff out & now use baking soda. Now they (it was on the news the other day) are advising for children not to use toothpaste to just use water & floss.

Is there anyone in your house cooking with wheat flour? If so very HIGH chance you are getting cross contaminated from that.