Eating Disorder & Celiac Disease?

[katz]

I was diagnosed 15 yrs ago with fibromyalgia. Was told then there was no help for it - I just had to learn to "live with it".

In 2008 I had a heart attack (or so I was told by emerg. doctors at hospital. Spent 2 days & $30,000 for them to say they didn't know what caused it & here were some meds - & oh, I couldn't have a follow up because I owed the cardiologist too much money! Needless to say I had no insurance!)

After 2 yrs of going from doctor to doctor & getting sicker & sicker I finally found a clinic in 2010 that diagnosed celiac disease, hashimotos & rheumatoid arthritis. I went on a gluten free diet & brain based therapy that this clinic specializes in. I felt so much better (with some ups & downs) that I swore I wouldn't touch gluten ever again. Since then, I've also had to go off casein, which is a little harder & caffeine which is almost impossible!

My problem is - I don't cook. I live alone, work a swing shift full time plus run a cat sanctuary with 22 cats, so my time & energy are very limited. I never really learned how to cook so I almost always ate out. With my diet however, even watching for gluten, I suspect I was getting small amounts all along.

The last couple of months I have started to cheat on the diet in increasingly large amounts. I will of course feel awful & then beat myself up terribly for being so stupid. Everyone tells me that I'm the only one who can do this (stay on the diet) but all this does is make me feel more & more alone. There is no local support group that I can turn to & my family is 1000 miles away. Intellectually, I know I have to stay on the diet & I even want to, but emotionally I'm getting more & more rebellious & now I'm starting to get scared.

I've begun to wonder just lately whether this is in some way related to an eating disorder? At the clinic we traced my symptoms to see how long I had been sick & I realized they had started around 15 or 16 yrs of age (& I'm now 53) - my whole life has basically been about the avoidance of food. Before I went on the gluten free diet I was down to only eating once a day & my immune system was so messed up it didn't matter what I ate - I felt terrible. If I could have stopped eating altogether I would have. Now I'm told that if I only eat certain things - I will feel terrific, but am I still having some emotional backlash against eating?

This is really difficult to exlain coherently, so if anyone else out there has experienced this or know what I'm talking about, could you perhaps let me know? I'm beginning to think I'm just nuts. Am getting really tired of the struggle.

[nvsmom]

(hugs) I'm sorry to hear you are having a hard time now. I have a harder time making the effort to cook well when I don't feel well, and then when I don't eat well I don't feel well.... a really bad cycle.

I have read about a link to eating disorders with celiac. In fact, my cousin who was diagnosed 10 years ago in her 30's suffered through anorexia as a teen and young adult; I've often wondered if there was a link there but I haven't asked her... I didn't want to pry.

I know personally, my eating was affected by the celiac. I used to overeat on occassion...not sure if it could be classified as a binge but it was way too much but I usually had a stomach when I ate so overeating was just another stomach ache. My portion size has shrunk since going gluten-free.

Do you have your Hashi's under control? As you know, that can cause fatigue and depression if you don't have enough Free T4s or T3s. You might want to check and see if your TSH is near a 1 and if your Free T3 and FT4 are in the upper end of the normal range for your labs... that seems to be the best spot for many Hashi patients. It might make it easier for you to comply with the diet...

You probably know this, but you need to learn how to cook a few things so you are eating better. Pre prepared foods and resturant foods are not as good for you, and cost so much more too.

Eggs are a great food. I make a egg bake a couple of times a week and it's wonderful leftovers. i fry up a few veggies (peppers, onions, spinach or whatever appeals to me) so the bottom of my fry pan has about an 1" of cooked veggies. Then i beat 8-12 eggs with some water or salsa or coconut milk and put it on the burner on low. Once the edges are solid I put it in the oven at 300-350F for 10 minutes. I then turn off the oven and let it sit longer until the middle is set and starting to turn a golden colour. It takes half an hour, and when it's done I have 3-5 meals to put in the fridge.

Chicken breasts and fish take aboyt 30 minutes in the oven at 425. Rice is a piece of cake: 1 part rice to 2 parts water, add a gluten-free boullion cube for flavour, bring to a boil, reduce heat to low and cover for 30-45 minutes and it's done. Cook extra of everything for leftovers. Frozen veggies nuked in the microwave are handy when short on time. gluten-free noodles cook just as fast as regular...I hope you'll try to comply with the gluten-free diet. It's not that hard to cook gluten-free.

Get rid of your cheat foods as soon as you can... I think you are on a slippery slope right now. I hope you can scramble off before you slide to the bottom and you have serious intestinal damage again, and possibly aggravate your Hashi's and RA with the inflammation untreated celiac disease causes.

Best wishes. I hope you feel better soon. (hug)

[GF Lover]

Hi Katz

I just started a topic about this a couple weeks ago. Do a search ”fear of food". The suggestions I received were great and it is helping me eat more and better. It's very hard but I think once you wrap your head around this thing it will get better. Your commitment to your health is essential. If I can help at all just shoot me a message.

Colleen

[shadowicewolf]

Cooking isn't that hard

Get yourself a crockpot toss some meat and veggies in and vala a meal.

[bartfull]

I have never cooked. I was just like you - almost everything I ate came from a restaurant, and when I DID cook it was something like a frozen pizza.

I still am not much of a cook, but I do cook chicken in the oven. I even use disposable pans so I don't have to wash dishes. Then I buy broccoli or cauliflower (fresh). I put some instant rice in a bowl and microwave it, shred some chicken in it, chop the veggies really fine, and throw the whole mess back in the micro for a minute and a half. Sometimes I put some extra sharp white cheddar in it too.

This can be prepared ahead of time and put into individual zop-lock bags in the freezer. When I want to eat I just take a bag out of the freezer and mic it. I often make enough on Sundays to get me through the whole week.

Potatoes and sweet potatoes can go in the oven with the chicken, so those are easy. You can cook a bunch at once and have them in the fridge for whenever you need them. And you can still microwave them to get them hot while you're heating the meat and veggies.

The veggies are the thing that blew my mind. If you mic them with the other stuff, there is no need to steam or cook them first. When they are mixed in with the rice or potato, they cook just fine in the mic. Just chop them really fine.

If cooking is easy you are more likely to eat. I'll never be a great cook, but my meals taste fine to me and they are so easy I don't mind.

[Lady Eowyn]

Hi Katz

I am celiac and hashi's too and similar age so undiagnosed celiac for donkey's years.

I too struggled with what I assumed was some kind of eating disorder including seeing psychologists, etc (did no good) and I just lived with it. In hindsight I am sure it is all due to the effects of gluten. Maybe it's due to malnourishment or something.

One of my symptoms of cross contamination is that it kind of triggers me to eat. Pre-gluten-free I could never eat a large meal because it would make me desperate to eat - what kind of sense does that make?

Also the feeling ill would kind of make me eat more - crazy.

What this leads up to is a vicious cycle as you have mentioned. Feeling poorly/lack of energy, feeling bad about it all and hey ho another snack to try to feel improved.

Well I don't need to tell you - it so doesn't work!!!

You have to make a big effort to eat right - to feel a bit better - to eat right some more.

At least now - 2 years on - I feel so ill at a hint of cc there is no way I can eat gluten but one of my signs is wanting to eat.

Sadly, I can't currently eat lots of other things either my digestive system just can't handle it. However, I am travelling hopefully that one day I may get some of them back .

Would like to add - stick with this forum, it has greatly helped me.

[Lady Eowyn]

Hi again!

Have just re-read your post Katz and see you finished with being 'tired of the struggle'.

For me, the 'struggle' has been like part of the learning curve.

A real low for me was finding I couldn't manage processed food, rice or potatoes. That got me super resentful . If I could eat all the gluten free stuff suggested on the Newbie thread I would spend all day skipping and singing and waving my arms happily.

I got past it (making myself ill from eating it) and I've slowly sorted it out in my mind. Got better at finding other yummy things to eat that I'm ok with. Try not to beat yourself up but do keep at it all the time - don't give up.