Struggling With Recovery :(

[MissBonnie]

i was diagnosed 3 months ago now and ive been improving but the past 3 weeks ive spent in bed with severe abdominal pain. i mean i cant even get up to eat or anything. why is this happening? will i ever get better? please tell me some encouranging things im struggling for positivity right now im only 22 and my life is passing me by..

[Aussie Farmer]

Chin up Bonnie if you are an Aussie or even a Kiwi I know that for us "when the going gets tough > the tough get going " I have been right where you are now as a celiac 9mths now and I remember thinking "COME ON ........3 WEEKS NOW,,,, WHEN WILL this EASE UP" !!! but it did, around that time so hopefully anyday now you will improve, bit by bit to the stage when you will be better than ever before .....yeeeeee haaaaaaa

i was diagnosed 3 months ago now and ive been improving but the past 3 weeks ive spent in bed with severe abdominal pain. i mean i cant even get up to eat or anything. why is this happening? will i ever get better? please tell me some encouranging things im struggling for positivity right now im only 22 and my life is passing me by..

[Marilyn R]

i was diagnosed 3 months ago now and ive been improving but the past 3 weeks ive spent in bed with severe abdominal pain. i mean i cant even get up to eat or anything. why is this happening? will i ever get better? please tell me some encouranging things im struggling for positivity right now im only 22 and my life is passing me by..

I'm sorry you're feeling so bad, especially when you should be feeling so much better. What are you eating?

Many of us develop other food intolerances, especially to dairy, soy, corn. The protein is similar in structure to gluten and your autoimmune system keeps attacking. I have to avoid quinoa too.

It may help to see an allergist too. Good luck!

[MissBonnie]

I'm sorry you're feeling so bad, especially when you should be feeling so much better. What are you eating?

Many of us develop other food intolerances, especially to dairy, soy, corn. The protein is similar in structure to gluten and your autoimmune system keeps attacking. I have to avoid quinoa too.

It may help to see an allergist too. Good luck!

yes i know i struggle with corn so i avoid that and ive just started drinking lactose free milk too. i dont know why ive been so sick for so long. it just makes no sense ive been at the doctors for an ultrasound because she was worried about my gall bladder but that was fine. its just so much pain..

[Jenniferxgfx]

Lactose free milk, if from cows, can still be an allergen. You might want to try something nondairy. Almond is tasty.

[MissBonnie]

Lactose free milk, if from cows, can still be an allergen. You might want to try something nondairy. Almond is tasty.

oh really? i didnt know this... perhaps ill just stop milk all together. i dont know where to get almond milk

[Roda]

oh really? i didnt know this... perhaps ill just stop milk all together. i dont know where to get almond milk

You can always make your own almond milk.

Ingredients:

1 1/2 cups almonds

4 cups filtered water

sweetner to taste (optional)

Take almonds put in a bowl and pour boiling water over them. Let them sit for a good 5 minutes or so to blanch them. This will make getting the skins off easier. Drain and remove skins. Place almonds and water in blender and blend for several minutes. Strain almond milk through cheese cloth. I found jelly straining bags at a local hardware store and these work so much better. I do find that I have to squeeze the rest of the liquid out of the almond pulp. Add sweetner to taste. I put a little maple syrup or honey to give it just a subtle hint. Now what to do with all of that almond "pulp" that is left? I keep it and use it in baking where ever it calles for almond meal. Works great and no waste. I usually only make 1/2 a batch at a time.

If you are feeling poorly, you may just try giving up dairy completely since a lot of people don't tolerate it especially in the beginning. After you heal you may be able to reintroduce it.

[mushroom]

There is almond milk down under. Sometimes they put it with the regular milk, sometimes it is with the boxed long-life milk, sometimes it is in the organic/gluten free section of the store, but it is definitely available. So is rice milk, but don't buy Rice Dream because it is processed with barley and a lot of celiacs react to it. Lactose/dairy is the first thing to eliminate if you are celiac. The other things to try eliminating (one at a time and keep a symptom diary) are soy, corn, eggs, nightshade vegetables (potato, tomato, peppers, eggplant or aubergine.) Unfortunately, allergists really (most of them) don't know a lot about this stuff, they just know how to prick your skin and pur stuff in there amd ,make grandiose predictions besed on what happens then, and know nothing much about what happens when you actuallly eat food.

[IrishHeart]

Three months is just a start to healing, Bonnie! I know how hard it is, but you will feel better in time. I struggled mightily with burning mouth, throat,stomach and awful abdominal pain (the gripping bloaty stuff where you want to cry) the first four months. Sorry to tell you that BUT REMEMBER, EVERYONE IS DIFFERENT and heals at different rates. I thought, Oh NO--what else is wrong with me? This is not working!! I am much older than you are and had more area to heal, no doubt!

Now, things are MUCH better.

I gave up dairy right away as the blunted villi cannot digest lactose and an IgG test said I was severely intolerant to soy (I know many celiacs are!) and so, those are out. I gain ground slowly each week.

There are many ups and downs with healing and the body is trying to "right the ship" so to speak and so, while we WANT TO BE BETTER RIGHT NOW, DARN IT ---we have to just stay the course.

An allergist will not help you much, I am afraid, unless you are having histamine responses?? Allergies are NOT the same as intolerances. Food intolerances behave in a different way. Do the food diary as Mushroom suggest. It will help you see a pattern.

One thing that helped me with digestion and the abdominal pain (because our systems have imbalances of gut flora) was to use digestive enzymes and probiotics.

Not sure if you use those..but they helped me relieve all that pain immensely!

Just some thoughts and I hope you feel better soon!

[MissBonnie]

thanks everyone. i know its just the beginning of healing but its so hard to get through each day

[GlutenFreeManna]

Drop the milk for sure! Some people are so lactose intolerant that they cannot even tolerate "lactose-free milk". It actually has very low amounts of lactose. Some people have trouble with casein instead of lactose--which the lactose free milk will STILL have. There are so many milk alternatives--almond milk, rice milk (just avoid Rice Dream brand), coconut milk, hemp milk...soy milk is a possibility too but I would not choose that one first since soy seems to be the next most common thing that some celiac suffers have to avoid.

[MissBonnie]

interesting, i will def hunt down some almond milk today! this website has helped me so much thanks everyone!

[MissBonnie]

tried rice milk today and loved it! its sweeter than regular milk which is yummy. thanks for getting me on that guys it will more than likely help my tummy as im great with all rice products just not corn and dairy

[Dee777]

i was diagnosed 3 months ago now and ive been improving but the past 3 weeks ive spent in bed with severe abdominal pain. i mean i cant even get up to eat or anything. why is this happening? will i ever get better? please tell me some encouranging things im struggling for positivity right now im only 22 and my life is passing me by..

Oh, you poor thing

I am so sorry you are going through this. Hopefully I can give you some words of comfort! I am not a young thing like you, I am 47 years old. However, I was recently diagnosed with Celiac on January 25 of this year. I went gluten free that very day and never once knowingly put another bite of anything containing gluten in my mouth. However, on or about the 3rd of March, something triggered the godawfullest reaction I have ever had. I suffered from incapacitating diarrhea for a solid eight weeks. I couldn't leave my house unless I allowed myself to become totally dehydrated for fear of having an "accident".

I was losing a pound or more a day. I would take a mouthful of water and it shot right out my other end. I was going for IV fluid therapy and my doctor was at his wit's end with me. I saw a specialist who could not help me. I seriously believed I was going to die. Wow, it was so bad...

I made some wonderful friends in here who suggested several things to me that helped, the most important for me was a very good probiotic. You WILL get better, stick with the gluten free diet. The pain WILL go away, be persistent. It's hard not to be depressed, I know. Sometimes a good cry is what can give us the courage to take a deep breath and lift our chins up and carry on! I am thinking of you, and wishing you well, and do know that it DOES get better, I am proof! I feel ever so much better now, and each time I put a bite of food between my lips I give thanks that I am able to do it lol As my mom is fond of saying (and her mother and HER mother before her) "What doesn't kill us makes us stronger..." (I used to roll my eyes at that saying all the time as a kid growing up but now my kids are going to hear it a lot more coming from me )

Take good care of yourself and get better soon!

Dee

[Korwyn]

Bonnie - I too had to drop the dairy. I tested positive for antibodies to the protein in cow's milk but I didn't cut it out right away. After a few weeks of getting better when I went gluten-free I started to decline again. I had to eliminate cow's milk and soy. I can tolerate goat's milk (don't like the taste though) and goat cheese (love the taste!). But coconut milk is one of the best milk substitutes. If you can find organic, unsweetened coconut milk try it in place.

[MissBonnie]

Oh, you poor thing

I am so sorry you are going through this. Hopefully I can give you some words of comfort! I am not a young thing like you, I am 47 years old. However, I was recently diagnosed with Celiac on January 25 of this year. I went gluten free that very day and never once knowingly put another bite of anything containing gluten in my mouth. However, on or about the 3rd of March, something triggered the godawfullest reaction I have ever had. I suffered from incapacitating diarrhea for a solid eight weeks. I couldn't leave my house unless I allowed myself to become totally dehydrated for fear of having an "accident".

I was losing a pound or more a day. I would take a mouthful of water and it shot right out my other end. I was going for IV fluid therapy and my doctor was at his wit's end with me. I saw a specialist who could not help me. I seriously believed I was going to die. Wow, it was so bad...

I made some wonderful friends in here who suggested several things to me that helped, the most important for me was a very good probiotic. You WILL get better, stick with the gluten free diet. The pain WILL go away, be persistent. It's hard not to be depressed, I know. Sometimes a good cry is what can give us the courage to take a deep breath and lift our chins up and carry on! I am thinking of you, and wishing you well, and do know that it DOES get better, I am proof! I feel ever so much better now, and each time I put a bite of food between my lips I give thanks that I am able to do it lol As my mom is fond of saying (and her mother and HER mother before her) "What doesn't kill us makes us stronger..." (I used to roll my eyes at that saying all the time as a kid growing up but now my kids are going to hear it a lot more coming from me )

Take good care of yourself and get better soon!

Dee

oh wow im so sorry you had to go through that! like you, i too have declined after 3 months of getting better. it sucks and i dont know what else i can do about it. its so hard to be in this much pain every single day. the only relief is when i sleep i hope i get better soon. right now it feels like ill be sick forever