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I'm So Confused

JerryK

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mtdawber Apprentice
mtdawber
Posted

Hi Jerry, you deserve to feel better. No family member, friend or foe should ever prevent you from that ... it is your right.... if you don't feel good, and you don't look after yourself first, how on earth could you ever look after and provide for your family?

If I didn't stop and get myself healthy sooner than later, how will I be able to help my teenage (pain in the butt sometimes) son, my daughter in university, my husband, do my job or otherwise? I will end up being a vegetable.... and that is not for me!

I understand it is tough to educate them and you have to be tough to do it.

My "gluten munching" husband is behind me 100% and I got a true Dx but he (like anyone) has his moments. Last night he didn't understand why I didn't want to stay at the wing place and eat in. Once I stood my ground with him (before we went in) and made him re-think his decision, he got it to go. He even waited at home and wouldn't eat until he was sure I had something at the table to sit down and eat with him.

I don't mean to preach but you get to feel good.... your family should stop and appreciate that! They should support you.....and you should put yourself first once in awhile! You deserve it.

Today I went and bought my own toaster for my own gluten free bread, bagels and english muffins....and I wrote on the butter - GLUTEN FREE! that way no one gets to poison me....I felt guilty spending the money on the toaster but my health is worth it to me....

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luvkin Newbie
luvkin
Posted

I guess I am lucky. I have a husband that is fully on board with the gluten free eating. All our dinners are gluten free. We do have gluten bread for sandwiches for lunches for the gluten eaters in the house but I am not expected to touch it.

I am going out of town this weekend and told my DH that he could make what ever he wants for the family when I am gone. He told me he likes the way we eat, he thinks it is healthy, and that he is going to continue with the gluten free dinners when I am gone. He, also,loves the gluten free brownie and cake mixes. He tells people that complain about being sick all the time about my results and tells them they should try gluten free diet.

sfm Apprentice
sfm
Posted
Hi Jerry, you deserve to feel better. No family member, friend or foe should ever prevent you from that ... it is your right.... if you don't feel good, and you don't look after yourself first, how on earth could you ever look after and provide for your family?

If I didn't stop and get myself healthy sooner than later, how will I be able to help my teenage (pain in the butt sometimes) son, my daughter in university, my husband, do my job or otherwise? I will end up being a vegetable.... and that is not for me!

I understand it is tough to educate them and you have to be tough to do it.

My "gluten munching" husband is behind me 100% and I got a true Dx but he (like anyone) has his moments. Last night he didn't understand why I didn't want to stay at the wing place and eat in. Once I stood my ground with him (before we went in) and made him re-think his decision, he got it to go. He even waited at home and wouldn't eat until he was sure I had something at the table to sit down and eat with him.

I don't mean to preach but you get to feel good.... your family should stop and appreciate that! They should support you.....and you should put yourself first once in awhile! You deserve it.

Today I went and bought my own toaster for my own gluten free bread, bagels and english muffins....and I wrote on the butter - GLUTEN FREE! that way no one gets to poison me....I felt guilty spending the money on the toaster but my health is worth it to me....

I write "gluten-free" on my butter, my peanut butter, my cream cheese, my mayonnaise, etc. I bought squeezable jelly so that bread crumbs don't get in the jelly. My little ones (7 and 10) know they have to be careful not to use any knives which have touched bread in these products. I am buying my own toaster this weekend.

I get excited when I find gluten-free foods that taste yummy - they ARE out there. My kids get a kick out of that. My 7 year old son asked me this week, "Mommy, do you have to eat gluten free forever?" I told him that gluten makes me sick and even if I go without it for awhile, it would be harmful if I started eating it again.

The thing is, I am so much less sick since removing gluten from my diet that to me it's all worth it.. When I have to explain to someone I don't know well, or speak up in a restaurant, I say I have food allergies. I know it's not the exact truth, but it works. I just think it's so much better to feel better that I don't really worry about people questioning it.

Sheryll

Sillyyakdidi Apprentice
Sillyyakdidi
Posted
See, even on this thread we have someone who thinks I should be eating gluten and trying to get

a Celiac panel from my doctor. Then another who thinks I shouldn't say anything to my HMO. Other folks will tell me to go

with my Enterolab results, because Dr. Fine is the man.... Oh the controversy!

Then there is Fiddle Faddle who thinks my family has time to make homemade Chili ;) Nah, it was Chili out of a can and I was disappointed when I read the label. I WANTED to have some, really badly. Knowing that I wasn't supposed to, made it worse.

Working full time, there's no way I'm going to make bread, let alone gluten-free bread. The best I could do would be perhaps purchase some, if I could find it.

Meanwhile my mental health is deteriorating.... :blink:

I have corresponded with Enterolab and they recommend a trial period of the gluten-free diet to seem if my symptoms improve. To their credit they are very responsive to your questions. I will stick to that commitment as long as my mental health holds out...

Well, first off, know you have company in what you're going through. The thing I found easiest concentrating on when I was first diagnosed is all the great things I can eat. A gluten-free diet pretty much forces you to be healthy, and just not eat anything out of a box or a can. Stick to this site, everyone on it seems to have great ideas and tips, and it makes things alot easier!!!

tarnalberry Community Regular
tarnalberry
Posted
Then there is Fiddle Faddle who thinks my family has time to make homemade Chili ;) Nah, it was Chili out of a can and I was disappointed when I read the label. I WANTED to have some, really badly. Knowing that I wasn't supposed to, made it worse.

Working full time, there's no way I'm going to make bread, let alone gluten-free bread. The best I could do would be perhaps purchase some, if I could find it.

I also thought you should make homemade chili. Do you know how long it takes? You can make it in 15 minutes. Really. There's lots of other things that you can make quickly as well. Being a full time worker is no excuse - I'm quite familiar with 40, 50, 60 hour weeks, and you still have to eat. :)

happygirl Collaborator
happygirl
Posted

lonewolf: gluten intolerance is not the same as Celiac. In general, Celiac refers to villous atrophy caused by an autoimmune reaction. non-Celiac gluten intolerance does not damage the intestines.

However, in terms of maintenance and day to day living, yes, the treatment is the same.

lonewolf Collaborator
lonewolf
Posted
lonewolf: gluten intolerance is not the same as Celiac. In general, Celiac refers to villous atrophy caused by an autoimmune reaction. non-Celiac gluten intolerance does not damage the intestines.

However, in terms of maintenance and day to day living, yes, the treatment is the same.

I know they're not supposed to be the same, but I have EVERY symptom that points to Celiac. (I should say HAD, I'm better now.) Many people here are in the same boat. I had "IBS" and "leaky gut" and have at least 2 autoimmune problems that have gotten better since going gluten-free. My intestinal tract is working much better now, but there's no way to see if it was ever truly damaged to start with. My real point should have been to say that non-Celiac gluten intolerance IS AS SERIOUS as celiac disease and needs to be treated as such.

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JerryK Community Regular
JerryK
Posted
  • Author

OK, I KNOW I ,in my heart of hearts, I know that gluten affects me badly. Whether or not that means I have true Celiac, I do not know.

What I do know is I MUST have a definitive diagnosis if possible. I have a twin brother and family. I need to be able to look them in the eye and tell them I unequivocally have Celiac and that THEY need to be tested too. That is the only way to make them, especially my brother (who claims to not have

any gastro symptoms) believe it. (Assuming of course that I do have it)

So, having said that, I

Viola 1 Rookie
Viola 1
Posted
OK, I KNOW I ,in my heart of hearts, I know that gluten affects me badly. Whether or not that means I have true Celiac, I do not know.

What I do know is I MUST have a definitive diagnosis if possible. I have a twin brother and family. I need to be able to look them in the eye and tell them I unequivocally have Celiac and that THEY need to be tested too. That is the only way to make them, especially my brother (who claims to not have

any gastro symptoms) believe it. (Assuming of course that I do have it)

So, having said that, I

msutherlin Newbie
msutherlin
Posted

Jerry,

I personally think you have made the right desision to get biopsied. You have children and you have siblings. You might be the first in your family to find out about this. You are the one who has the opportunity to expose this, if you have celiac. Otherwise, will your siblings listen? And you really, really need to know if you have it because if you do, your children must be tested. You would not want to just go on the diet not knowing letting them go about their lives letting them potentially get an illness that could be prevented had you known for sure. If you come out negative, that could mean two things, one, that they missed it and you do have it and two, that you do not have it and indeed are gluten-intolerant. Either way it sounds like you need to stop the gluten. If if came out negative, I would keep an eye on those kids and if they ever show signs of it, I would get them in for testing. This can cause so many health problems untreated and prevent so many when following the diet.

I am speaking from the same place you are at. I am currently eating a gluten filled diet. I am loading up in preparation for my biopsy that is scheduled on the 25th of this month. I had part of my blood work come back positive and part of it come back negative. My doctor told me to stop the gluten and I did for two weeks. But as I read and learned information and got in to see a gastrointerologist I realized I really needed a biopsy. I need to know for sure because I too have children. I need to know for them. This is not about me. I also have two brothers. One has a child that already has had two diseases that are immune related at only age 16.

If mine comes back negative I have already made the decision to go gluten free. I felt so much better the two weeks I was off it. My heart doctor told me that should be proof enough and that they can miss it in the biopsy, but also agreed that I should have it done. He told me as firmly as he could to get off gluten as soon as my testing was finished.

It is very difficult, but like others have said you just need to find subsitutes for your favorite foods. Go to your local health food store and just buy a bunch of stuff and try it. And think positive. I know it sounds hokie, but you HAVE to. I love to eat at our local Culver's. So I can't have a butter burger. I have to get the salad. But I can eat the chocolate custard with peanut butter sauce and cashews. It's a trade off like all of life. I think we will both mourn the foods we love. But I for one have felt sick for so long I am gladly going to give it up with or without a positive diagnosis. At least I will have the peace of mind that I tried to get one. No wondering.

And if you really want chilli, I think both Wendy's and Steak and Shake have it on their gluten free menu's.

JerryK Community Regular
JerryK
Posted
  • Author
If mine comes back negative I have already made the decision to go gluten free.

Yah, I'm in that place now also. Positive or negative, my future will be gluten-free. First day back "on"

and already I feel $hitty....pun intended.

Seriously, after two weeks, I could REALLY feel it hit me. The fatigue, the irritability, the brain fog...amazing. I guess I got used to feeling like that all the time. j

aikiducky Apprentice
aikiducky
Posted

Regardless of how the tests turn out, this might turn out to be a good experience. Because now you can feel the difference that gluten/no gluten makes. If you had just continued gluten free, you might keep wondering much longer.

Good luck with the tests!

Pauliina

trying to look at the bright side of everything....

msutherlin Newbie
msutherlin
Posted

I went back on gluten about a week before Christmas and I swear I feel worse than I did before. The symptoms started back right away. It has been a very long couple of weeks and I just keep counting the days until my test and gluten freedom. My husband and I went out to eat last week with friends to an italian place. You would have thought I would have savored eating my favorite pasta which I did, but the entire meal I was in pain. Bloated, gassy, you name it. I took 4 gas-x and it did nothing! I was so uncomfortable I had to sit up straight and lean back in my seat all the while pretending I felt good. Why didn't I just stay home or leave early? This has been the story of my life. If I did that everytime I felt bad I wouldn't have a life. It's something that had become normal to me. Funny thing is, the last time I was at that restuarant was 2 years ago, and I felt exactly the same, pain and miserable. I remember getting home on that night two years ago and going for the peppermint tea. As I sat there at dinner last weekend while everyone was talking, I was thinking how many dinners out with friends I had sat in this same pain and misery. Or how many times I went for the day with a friend shopping and after having lunch running to find the bathrooms. How I started on the peptp, milanta, gas-x at such a young age and it just became part of my life. I've lost a lot of years not feeling good and not enjoying things as I should. Going off the gluten and back on really confirmed that for me.

The other thing I thought of last night after posting is also the importance of making sure they're aren't any other things wrong with you. I know my gastro is also doing a colonoscopy the same day as the endoscopy/biopsy. He wants to rule out crohn's and all the other things that could have the same symptoms. I think it's important to know that as well. So, hopefully we will both come out on the other side of this and be able to lead more healthy, comfortable lives!

jerseyangel Proficient
jerseyangel
Posted

Hi Jerry,

I respect your opinion, and wish you the best of luck :)

Please don't worry about the biopsy--it's really not bad at all. I was asleep for mine--woke up refreshed and just felt like I had a nice nap. Truly, nothing to be afraid of.

mtdawber Apprentice
mtdawber
Posted

Jerry, good luck. Hopefully your biospy will be soon and you can start to feel better again. Let us know how it goes.

JerryK Community Regular
JerryK
Posted
  • Author
I went back on gluten about a week before Christmas and I swear I feel worse than I did before. The symptoms started back right away.

It's funny you should say this, because OMG did I experience it. After two weeks gluten-free, I ate some croutons in my salad and then had a bit of pasta. Man oh man did I feel it. Brain fog, blurred vision, bloating, cramping, tummy rumbling like Mt. St. Helens, irritability, depression...going to the bathroom half a dozen times in one day.

Just like I imagine PMS to be, except for the bathroom part. This seriously does it for me. I had no idea how bad I was feeling, because I'd gotten used to feeling bad. The

worst was, it felt SOOOO much worse than before, likely because I'd had a couple weeks of feeling better.

After I eat a gluteneous dinner, I wake up the next morning with a hangover. Just like I'd had a few too many. Freaking amazing that I made it to 46 years old and NEVER made this connection. :blink:

Jerry

JerryK Community Regular
JerryK
Posted
  • Author
Regardless of how the tests turn out, this might turn out to be a good experience. Because now you can feel the difference that gluten/no gluten makes.

This was sooooooo true, after about 6 hours, it hit me like a dump truck(see my previous post)

I guess I'd felt better gradually and it didn't seem so dramatic, but boy oh boy. The first couple

days back on...keep the sharp objects away, it's BAAD. I'm in awe of the power of gluten. I

finally get it. It's like being in a daze, like being drugged and you don't even realize it....

nikki-uk Enthusiast
nikki-uk
Posted

Good luck to you Jerry !!

Keep us posted on the outcome :)

JerryK Community Regular
JerryK
Posted
  • Author
Good luck to you Jerry !!

Keep us posted on the outcome :)

Feeling better today...moderated my intake of gluten the last day or so....

How do you eat enough to test positive, yet keep yourself from being miserable? :o

In any case the two week gluten-free period, and my reaction upon eating gluten afterwards, has pretty well

clinched it for me. I find myself decidedly unskeptical now:0

Guhlia Rising Star
Guhlia
Posted

Jerry, so sorry you're feeling so crummy. Going back on gluten for testing has got to be the worst feeling, especially when you KNOW your problem is gluten. Are you sure you still want to go through testing? You do already have the Enterolab positive results. Perhaps your family would accept those as gold if you yourself treat them as such. Just a thought... Since you're feeling so crummy. Either way, I respect what you're doing and I hope it goes quickly for you and you get the desired results.

darlindeb25 Collaborator
darlindeb25
Posted

To begin with Jerry, only 2 weeks gluten free will not heal anything--if the villi are flattened, they still are. You can't heal in 2 weeks, you can feel better because you are not feeding yourself poison everyday, but healing takes longer. Don't overdo the gluten.

Deb

JerryK Community Regular
JerryK
Posted
  • Author
To begin with Jerry, only 2 weeks gluten free will not heal anything--if the villi are flattened, they still are. You can't heal in 2 weeks, you can feel better because you are not feeding yourself poison everyday, but healing takes longer. Don't overdo the gluten.

Deb

Yah...I found out what happens when you go from gluten-free to overdo....not good :blink:

kbabe1968 Enthusiast
kbabe1968
Posted

You are so much braver than I! i can't do it! I've thought, like you, that I need a doc's diagnosis! I thought, I could eat it again for a few weeks, just till I get the test...sure, I can. NOPE!!!

Thankfully, I'm the kind who can just say "it feels better" and move on (still going to have my kids tested though, I don't want them EVER to go thru this in their life).

I'm hoping you hang on thru this period, and I hope you get your conclusive stamp on it, so that going back on the diet will make you feel better AND you'll have your info to arm you as well.

Keep us posted on how you're doing!

Phyllis28 Apprentice
Phyllis28
Posted

I hope that the tests can be scheduled very quickly so you can feel better sooner.

mtdawber Apprentice
mtdawber
Posted

I have the biospy on the outside (skin) for DH confirmed and blood tests so I don't think in April I will go back to be gluteneous (is that a word?) in order for the biospy on the inside to come out they way a doctor wants. The thought of feeling that sick scares me. Jerry, you have strength to go for the diagnosis. I hope you are feeling better soon!

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

      By trents · Posted

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

      By catnapt · Posted

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

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • 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
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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