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Hi, I'm New. Few Questions.

Tempestkin

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Tempestkin Newbie
Tempestkin
Posted

I've read some of the forum. However, there really is a lot to go over. So, I have a few questions, and a few things I could use some clarification on. I got diagnosed this past friday.

1. This is my biggie, How come a lot of people have said that they had to get new utensils, and pans and such? I can understand things like butter, and some of that stuff. Even cutting boards, but really confused as to how gluten could stay on metal knives?

2. I got the blood work, and came back negative for celiac's. However, I got an endoscopy, and came back positive, for a mild case of celiac's? I'm not sure what confuses me more, the fact they called it mild or the fact I came back negative at first.

3. I didn't even know I could withdraw from gluten, but how long does it take to recover from/get over?

4. How long before I really begin to feel better, I read somewhere it can take 3-6 months for children, and 1 to 3 years for adults. Is it really going to take me a year or more to recover? I understand that it means intestinal repairs, but it is a bit unnerving to think I won't be getting full nutrients for a good year or more.

5. I'm still living with my mother, [due to the fact I have seizures.] She doesn't plan to go gluten free with me, and I'm not going to make her. She is 53, and I'm 21, but she also just got dentures and well bread and such is still a bit of a soft food. We already planned on getting me a new cutting board, [mind you I just put wax paper over our old one for now and call it a day.] However, is this enough? We really can't afford new pots and pans and all that jazz. She is prepared to help me in anyway possible, i.e. I'll have my own butter, my own stuff like that so...

6. How come I see people who get worried about gluten in shampoo, or soap, or things that would [well, should] only come into contact with the skin? I thought celiac's really only effect my small intestine?

7. Why do I see even more people cut out dairy, soy, and the such? I'm really confused by that. I'm not good with drastic change, and for now I only plan to eat food that is gluten free.

8. Also, I have been dealing with joint problems, underweight, anxiety issues, stomach pain, lack of wanting to eat because it hurt to eat [i kept choking on food], and then the stomach problems after that, acid reflux got really bad also. It got to the point that for the past few months, I was eating considerably less, but had also changed my diet to a more... "calmer" diet in my opinion. Drinking mostly water, eating mostly fruits, cut out most soda, and such [Mind you, I did have a few pieces of bread and such so I wasn't gluten free.] I had assume this was due the various wonderful meds my doctors had moved me on to prevent seizures, something like 11-20 pills a day for a few months there [Not including aspirin, I was given bottles of that for my past two Christmas's] . I was told most of my problems came from that, however... could this be the celiac's? Could I have had celiac's most of my life? Just a question of wondering.

Also, I've been medicine free, and seizure free since march. [Well, mostly medicine free.]

Any other helpful tips? As of right now if I've been unsure of anything, I've either google'd it or just gone with my "gut" and avoided it. If I feel that I am still having issues, I will go into what I consider more extreme measures, and clean up things more or cut things out. However, I'm always been one to be cautious and optimistic rather then drastic changes all at once. Also sorry for the very long read... ^^;

p.s. My internet died well writing this, so I kinda had time to add stuff as I waited for it to get fixed. So... Sorry!

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kareng Grand Master
kareng
Posted

1. This is my biggie, How come a lot of people have said that they had to get new utensils, and pans and such? I can understand things like butter, and some of that stuff. Even cutting boards, but really confused as to how gluten could stay on metal knives?

5. I'm still living with my mother, [due to the fact I have seizures.] She doesn't plan to go gluten free with me, and I'm not going to make her. She is 53, and I'm 21, but she also just got dentures and well bread and such is still a bit of a soft food. We already planned on getting me a new cutting board, [mind you I just put wax paper over our old one for now and call it a day.] However, is this enough? We really can't afford new pots and pans and all that jazz. She is prepared to help me in anyway possible, i.e. I'll have my own butter, my own stuff like that so...

6. How come I see people who get worried about gluten in shampoo, or soap, or things that would [well, should] only come into contact with the skin? I thought celiac's really only effect my small intestine?

7. Why do I see even more people cut out dairy, soy, and the such? I'm really confused by that. I'm not good with drastic change, and for now I only plan to eat food that is gluten free.

p.s. My internet died well writing this, so I kinda had time to add stuff as I waited for it to get fixed. So... Sorry!

Darn that internet! I'll just answer afew things. It can get overwhelming to try to take it all in at once.

#1 & 5:

New pans, etc issue - I didn't get new silverware, knives, etc. I think that metal & glass can be washed well. I did use a little vinegar around the part where the wooden handle meets the metal just to get any crumbs out of that crack. The problem is things that are porous. Or plastic which can be hard to get those sticky gluten molecules off. You need a new colander if your mom's has been used for wheat pasta. Get a new one in a different color. Use it for all fruits, veggies, gluten-free pasta, draining a can of beans, etc. Save the old ones for mom's pasta. You can get cheap cutting boards at the Dollar store. They are thin flexible plastic. Easy to store & can go in the dishwaher. Also, cast iron pans can get the gluten burned out of them if you put them thru a "Clean" cycle in the oven. Foil & wax paper are your friends. Use the foil to cover a cookie sheet before you put your Ore Ida Fries in the oven.

#6:

Some people have a skin reaction. I think especially if you have the DH rash that some people have. I don't want gluten in my lotions, soaps or shampoos because the lotion sticks to my hands or lips. Then it could get on my food or if you bite your finger nails, etc.

#7:

This may be an unpopular thing for me to say but - I didn't eliminate anything except gluten. The reason people cut that stuff out in the beginning is because they are hard to digest & are digested by the small intestine which is damaged. I did limit a little - Corn Chex for breakfast but no corn chips for lunch or corn in my soup for dinner.

Stopping for now. That's enough for you to "digest". ;)

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kareng Grand Master
kareng
Posted

Check this thread out if you haven't.

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Poppi Enthusiast
Poppi
Posted

1. This is my biggie, How come a lot of people have said that they had to get new utensils, and pans and such? I can understand things like butter, and some of that stuff. Even cutting boards, but really confused as to how gluten could stay on metal knives?

Serrated knives are impossible to clean properly so if you will be sharing a kitchen then don't use the serrated knives, stick with the straight blades and you'll be fine.

2. I got the blood work, and came back negative for celiac's. However, I got an endoscopy, and came back positive, for a mild case of celiac's? I'm not sure what confuses me more, the fact they called it mild or the fact I came back negative at first.

Blood work and biopsies are not an exact science. The blood work is completely dependent on how many antibodies your body is pumping out in response to the gluten and the thresholds the lab places on their testing. The biopsy depends on the skill of the surgeon, whether they sample the right areas and whether or not the person who examines the samples has them lined up just right etc... This is why many of us have chosen to be diagnosed (or self-diagnose) based on symptoms and/or family history and/or diet results and not go through the testing at all.

The "mild" celiac may just be because they sampled an area without a lot of damage or perhaps you are lucky enough to have discovered your problem before the damage became severe. This does not mean you can cheat and eat gluten sometimes because your celiac is "mild"!

3. I didn't even know I could withdraw from gluten, but how long does it take to recover from/get over?

Not everyone has withdrawal. I didn't and I am (was) a baker, eating and baking with wheat flour every day for years.

4. How long before I really begin to feel better, I read somewhere it can take 3-6 months for children, and 1 to 3 years for adults. Is it really going to take me a year or more to recover? I understand that it means intestinal repairs, but it is a bit unnerving to think I won't be getting full nutrients for a good year or more.

I felt better within the first few days but this does not mean I have made a full recovery. Some people take a long time to get better and some people improve very quickly. I feel a little bit better all the time and am slowly discovering that my body is now capable of things I have never done in my life like hiking and kayaking and playing with my kids.

5. I'm still living with my mother, [due to the fact I have seizures.] She doesn't plan to go gluten free with me, and I'm not going to make her. She is 53, and I'm 21, but she also just got dentures and well bread and such is still a bit of a soft food. We already planned on getting me a new cutting board, [mind you I just put wax paper over our old one for now and call it a day.] However, is this enough? We really can't afford new pots and pans and all that jazz. She is prepared to help me in anyway possible, i.e. I'll have my own butter, my own stuff like that so...

Having a mixed gluten/gluten-free kitchen is tricky. There needs to be a specified gluten area and/or a specified gluten free area. If your pots are non-stick then you really need to look at replacing them. Even just one or two to start with. Non-stick pots were keeping me sick.

Wooden spoons, plastic cutting boards and plastic utensils are also common culprits. Luckily things like that are cheap.

You can keep using cookie sheets but line them with parchment if you bake on them. I baked gluten free bread in a non-stick loaf pan and got really sick.

6. How come I see people who get worried about gluten in shampoo, or soap, or things that would [well, should] only come into contact with the skin? I thought celiac's really only effect my small intestine?

I don't want gluten in my body products because I use my hands to touch my food and I don't want them coated in gluten. Also, hairspray gets inhaled, lipstick gets eaten, shampoo and conditioner occasionally run into your mouth or eyes and an inflammatory immune response can be set off my mucous membrane contact.

7. Why do I see even more people cut out dairy, soy, and the such? I'm really confused by that. I'm not good with drastic change, and for now I only plan to eat food that is gluten free.

What you are seeing there is people who are discovering additional food intolerances once they go gluten free. Celiacs often have multiple food intolerances because their intestines are damaged which can impair the ability to digest the proteins in dairy etc. For many people they will be able to eat those foods again when they heal but others cannot. I can't tolerate coconut, food dyes or coffee but do okay with dairy and soy.

8. Also, I have been dealing with joint problems, underweight, anxiety issues, stomach pain, lack of wanting to eat because it hurt to eat [i kept choking on food], and then the stomach problems after that, acid reflux got really bad also. It got to the point that for the past few months, I was eating considerably less, but had also changed my diet to a more... "calmer" diet in my opinion. Drinking mostly water, eating mostly fruits, cut out most soda, and such [Mind you, I did have a few pieces of bread and such so I wasn't gluten free.] I had assume this was due the various wonderful meds my doctors had moved me on to prevent seizures, something like 11-20 pills a day for a few months there [Not including aspirin, I was given bottles of that for my past two Christmas's] . I was told most of my problems came from that, however... could this be the celiac's? Could I have had celiac's most of my life? Just a question of wondering.

Also, I've been medicine free, and seizure free since march. [Well, mostly medicine free.]

Any other helpful tips? As of right now if I've been unsure of anything, I've either google'd it or just gone with my "gut" and avoided it. If I feel that I am still having issues, I will go into what I consider more extreme measures, and clean up things more or cut things out. However, I'm always been one to be cautious and optimistic rather then drastic changes all at once. Also sorry for the very long read... ^^;

Possibly. I have found health problems I have been plagued with all my life are going away now that I am gluten free. for me celiac has caused:

Mouth sores

Muscle spasms

Severe back and neck pain

Joint pain

Osteoarthritis

Depression

Headaches

Constipation

Anxiety

Difficulty maintaining weight

Vitiligo

Unexplained rashes

Poor dental health

Constant nausea (I have been nauseated daily since I was a small child)

Chronic fatigue

Miscarriages

Infertility

Difficult pregnancies

Good luck on your journey! It's exciting once you start feeling well.

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kareng Grand Master
kareng
Posted

Thought of something else.

If you get new spoons, etc Try to get them in a different color than the gluteny ones. I got red. Get some colored masking/duct tape. I use red. You can put it around the handles of your pans or spoons. Put it on the lid of your PB, Jelly or butter tubs. It shows up better than just marking the jar with a sharpie.

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cahill Collaborator
cahill
Posted

#7:

This may be an unpopular thing for me to say but - I didn't eliminate anything except gluten. The reason people cut that stuff out in the beginning is because they are hard to digest & are digested by the small intestine which is damaged. I did limit a little - Corn Chex for breakfast but no corn chips for lunch or corn in my soup for dinner.

I did not eliminate any thing but gluten for over a year, Then since I was still having "issues" I started eliminating other things ,soy nightshades,diary ect, I did eventually have to do an elimination diet to find other intolerances and allgerys that were a problem . I was undiagnosed for a VERY VERY long time and had quite a bit of damage to my gut

I have since been able to add most foods back into my diet. Dairy is back in my diet :D , which to me is an indication my gut has healed quite a bit :D

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Tempestkin Newbie
Tempestkin
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Posted

Ahh... wow thank you for the nice replies~!

I talked with my doctor today, and they said my blood panel came back borderline, and my biopsy came back mild in where they pulled from. However, it did showed definitive signs for it so. I go back in 3 weeks to do a quick follow up.

As for the shared space, me and my mom have always had our own cub boards, and we have agree'd to get me my own knives, cutting board, and such. So, we'll do a step by step process. She has been super understanding, and wednesday we go for our outing to look at gluten free foods and such. Hopefully it goes pretty easily. We plan to check a tops and wegmans for some more specialty items for future reference.

The two big things I really hope get easier on me... is my ability to work out more [ I can never seem to recover from a good work out. I still push myself more then i should though], and gain weight. However, for right now I'm just hoping to feel better.

And thank you for the link~! :)

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