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Not Sure What To Do

Aleshia

By Aleshia
in Coping with Celiac Disease

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Aleshia Contributor
Aleshia
Posted

well, we are on the 4th day gluten free now (3rd full day) my back hurts worse than it ever did before , and krystjan is as irritable as ever.. crying over every little thing, constantly hungry, nothing makes him happy... he seemed to be doing so good... I know that someone did give him a couple of crackers yesterday in childcare at MOPS... :o I forgot they do snacks there so I never mentioned anything to anyone.. I'll have to take a snack for him next time... the only one who seems to be doing good is Zimri... his stools are normal consistency now although sometimes a bit mucosy looking. sometimes I start to doubt myself... "is it really all in my head? am I just trying to find an excuse for my own laziness and lack of consistency?? maybe I am just depressed and imagining that I'm in constant pain..." :unsure: I just don't know what to do anymore.. my husband is supportive in some ways but he just doesn't get how drastic the change needs to be... he isn't willing to get a new toaster or keep all the gluten stuff out of the house... he still wants me to keep up the housework, cook full meals 3 times a day, iron his work clothes, and do educational games with the kids... and more even though my spine constantly hurts now and I am so tired and weak feeling... I'm just not sure what to even eat anymore, I was doing pretty good about not having gluten, then I had a yogurt and got a bad tummy ache and had to keep rushing to the bathroom for about an hour... I don't know if my body is being even more sensitive to the dairy now that the gluten isn't there or what... I made sure the yogurt was gluten-free... and then there is the thing about the tests for the boys... I finally got a dr. to agree to do the stool sample test at childrens hospital so I'm supposed to call and make an appointment to go in and take the samples etc... but then as soon as I got the dr. to agree to that my husband says he doesn't want me to do that till all the bills come in from my tests etc... I know its a money thing and that he is trying to keep on top of bills... but this is important to me and now that I am doing the gluten-free diet when I finally do get to do the test 1. the results probably won't be accurate cause they won't be eating gluten and 2. the dr. is gonna think I'm a nut case for demanding that she do something and then not following through right away :( what if the doctors are right and I don't have celiac disease? :unsure: I'm back to square 1 with my huge list of symptoms that nobody will do anything about...

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Aleshia Contributor
Aleshia
Posted
  • Author

*sigh* I love my husband dearly and he is normally so good about things but I am getting really frustrated here... "gluten free bread is too expensive" "we're not going out to buy a breadmaker right now" "try the gluten free diet longer and then if it is successful we'll think about replacing things more seriously" "the toaster should be fine if you just clean it out good and run it a few times with no bread it it" :blink: I just don't know what to do... I don't want to be the nagging wife, he's the head of the household but he just doesn't get it!!! how can I know if it is working good enough to give an answer as to whether or not we have gluten intolerance if we are constantly cross contaminated???

home-based-mom Contributor
home-based-mom
Posted
*sigh* I love my husband dearly and he is normally so good about things but I am getting really frustrated here... "gluten free bread is too expensive"

Look at Trader Joe's. It isn't that bad and if it keeps you from getting sick it is well worth the extra dollar or two.

"we're not going out to buy a breadmaker right now"

That I can see. They are a bit pricey but you can bake bread without a bread maker. In fact one lady at my church had so much trouble adjusting to gluten-free bread making that she gave her bread maker away! :o

"try the gluten free diet longer and then if it is successful we'll think about replacing things more seriously"

If you don't replace at least some of the things, you haven't really tried the gluten free diet and you will never know if it would have worked or not. A package of 4 wooden spoons is a dollar at the dollar store. A colander is another dollar.

"the toaster should be fine if you just clean it out good and run it a few times with no bread it it" :blink:

This one he is really wrong about. It is not possible to cleanse it thoroughly enough. You can get a cheapie toaster at WalMart for less than $10. Use it for the bread you find at Trader Joe's.

I just don't know what to do... I don't want to be the nagging wife, he's the head of the household but he just doesn't get it!!! how can I know if it is working good enough to give an answer as to whether or not we have gluten intolerance if we are constantly cross contaminated???

That's exactly right. If you are constantly cross-contaminated, you are not gluten free, and if gluten is a problem it will continue to be making you sick. :(

psawyer Proficient
psawyer
Posted

I feel your pain. Clearly your husband does not get it. Unfortunately, I don't have any practical suggestions that I can think of at the moment that might help him see the light.

And you are right that you will not be able to tell if a gluten-free diet works for you unless you can follow it strictly. Perhaps you could eat only foods that are naturally gluten-free, and avoid bread completely for a while. No expensive gluten-free bread, and no need to use the contaminated toaster.

Fruits and vegetables and plain meat are gluten-free without costing extra.

I hope things get better for you.

GlutenGalAZ Enthusiast
GlutenGalAZ
Posted

Some people have a reaction to dairy as they are healing (you can re-introduce it in a couple weeks/months depending on the person) that is why the yogurt could have been bothering you.

In regards to the toaster, if you really like toast I would just get a inexpensive one for your gluten free bread.

You do not need a breadmaker to make bread. I got gluten free pantry sandwich bread mix and made it in the oven...VERY GOOD!! A LOT better than store bread already made.

There are a lot of normal type meals that everyone can eat such as:

*Spaghetti -- using gluten free noodles and gluten free sauce -- Classico red and white sauces are gluten free.

*Tacos -- Ground beef, McCormicks Chili Powder, Tomato Sauce with Mission White Corn tortillas or taco shells (they will say gluten free on the package).

*Thai Kitchen Rice Noodles (gluten free on box) with vegetables can add in chicken or other meat

*Dinty Moore Beef Stew

*If you can have corn and soy then Delimex Taquitos (corn not flour) is gluten free -- not all of the taquitos are gluten free. They also have tamales now.

My husband can eat gluten so we each eat what we want for breakfast and lunch and then for dinner he eats gluten free with me. It was hard and annoying in the beginning figuring out what we could both eat but then as I learned to read lables better and we understood things it got easier. My husband has seen me at my worst and is very supportive with the gluten free diet, especially since I am not rushing to the bathroom all the time.

Have you ever been to a chiropractor for your back? My back got really bad with work and the way I was sleeping and my chiropractor got my back all in place and gave me pointers on how to sleep and easy exercises to strengthen my back muscles. If you go to one for the 1st time just watch out they don't try to get you on a plan.

The first couple weeks are the worst when you go gluten free.

GOOD LUCK --

Aleshia Contributor
Aleshia
Posted
  • Author

feeling better about things, I'm sure that it was glutan that caused my son's regression... things are getting better he just had his first normal bowel movement (ever) and he was really happy all day long, a perfect angel... still having difficulty focusing and concentrating... but at least he isn't whining about everything all day long! :) I'm sure it must be the gluten! also my husband is feeling better about things and "getting it" more!

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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