Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

New here


kim01

Recommended Posts

kim01 Newbie

Hi everyone I'm new to the group. I 39 years old and have 4 kiddos. 2 of them are a set of biological twins *boys) and 2 little girls who we adopted through foster care. We also do foster care so basically have 5 kiddos even 6 at times. I got diagnosed with celiac about 2 years ago. It started shortly before we brought our baby girl home from the hosptial. I also have type 1 diabetes since i was 18 months old. It started with me getting the flu. I have only been "sick" a few times in my life up to that point. I came down with the flu. couldn't eat anything for months.i went from 135 to 108 lbs. I am very very sensitive. I have been in the hospital many times before we found out what was going on. And since getting the diagnois have been back a handful of times. just b/c i can't keep anything down (cross contamination) and sugars all over the place. i just got out of hosptial last weekend b/c of celiac. I hate this desease it sucks.  i wouldn't wish this on my worst enemy. When i get cross cantaminated i get violentally ill for days. Thanks for letting me vent a bit.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



bartfull Rising Star

Welcome, Kim. You need to learn how to avoid cross-contamination. In the coping section, pinned to the top is a thread called "Newbie 101". Check it out. It'll teach you so much. I know it must be hard in a house full of kids but you MUST, for your sake and for theirs, get strict with yourself. There are plenty of folks here who live in mixed households. Believe me, it can be done. Even if you have to keep your own food, condiments, toaster, etc. in a locked cupboard. You'll just have to keep going back to the hospital if you don't, and of course you know you run the risk of further autoimmune diseases that'll make celiac look like a piece of cake. Sorry if I sound harsh, but it's the truth.

So go check out that thread. Then cruise around the site and you'll see how others with non-celiac kids and spouses do it. Others will be along soon to chime in too. :)

nvsmom Community Regular

Welcome to the board.  :)

Cc is a problemwhen you are exposed to gluten. It sounds like you need to reduce the risk of being glutened by cc. Perhaps consider making the house gluten-free for simplicity.  Technically the rest of the family doesn't need to eat gluten, it just makes a nice texture in baked goods.  Maybe they can restrict their gluten to outside of the house so you can stay healthy and safe with greater ease?

My house is gluten-free, and it REALLY simplifies things for me.

If you keep a mixed house, you will have to be strict. Condiments, jams, butters, peanut butters and maybe even syrups ca not be shared. Shared toasters are a no-no too.  Consider cleaning things before you use them to prepare food even if they were supposedly put away clean.

Off topic but, you will need to get your boys checked for celiac, and rechecked every two years for the rest of their lives.  They could have a 1 in 10 chance of developing celiac disease, and it could show up at any time in their life.  :(

I hope you feel better soon.

kim01 Newbie

Thanks for the replies. I don't eat bread of any kind (bagels, bread etc) i can't stand the smell texture. its been a good 10 years since i have toast, bread etc. I do have several shelves that are gluten free. I have my own dishes, pans, silverware, mixing bowls, mixer etc . i only use paper towels to clean counters off and to dry my hands off. I am a bit weird on germs and hand towels are so nasty to use. i also have my own condiments. but don't really eat anything that is like that. I don't eat peanut butter (my angel baby is peanut allergic), mayo, ketchup, mustard, jellies etc. i do use butter and have my own. i also don't use the toaster (no need for it) or a toaster oven (again no use for it). we are slowlty moving everyone to gluten-free. I'm not that concerned with the whole house being gluten-free though. I also have my own set of dishes, and cooking utensils, measuring cups/ spoons. I only drink diet pepsi, so i don't have gluten-free cups or mugs. i was mostly just venting what a pain in the butt it is. I'm use to it now i guess. i only eat a limited number of things even b/4 i got celiac. I have alot of germ and fodd issues lol. I did check out the advice you guys mention. 

thanks for letting me vent.

plumbago Experienced

Perhaps consider making the house gluten-free for simplicity. 

I was thinking this myself while reading the post.

manasota Explorer

Kim01, what a wonderful thing you are doing by giving all your love and attention to those beautiful, deserving children.  It's a fantastic thing.  I would argue that you also are beautiful and deserving of your love and attention.  There is enough to go around.  It multiplies.  You mention a "we" in your household.  The other half of your "we" needs to help you establish and maintain a gluten free household.  Your body is screaming for this. It is not typical for a Celiac to need to be hospitalized.  You situation won't get any better until you change some of your behaviors.  Time will probably not fix your problems.  Start by trying to love yourself as much as you love all those children.  You deserve it.

Aside from the gluten cross-contamination issue, a red flag for me is that you said, "I only drink Diet Pepsi."  Does this really mean you drink 8 cans of Diet Pepsi per day?!?!  All that caffeine, carbonation, and fake sugar isn't good for anybody's digestion.  Even though they recently took out the aspartame, they replaced it with two other chemicals.

I know how you may feel about the Diet Pepsi.  When I was 18, I was "addicted" to Pepsi.  I loved that stuff.  It's about the only thing I drank.  It is possible to establish new, more healthful habits.  It's possible to drink only water--that underrated stuff that is free and conveniently comes out of our taps.  I did it.  You can make it more "special" with fruit (lime, orange, strawberry,or any other).  I use lemon for taste and also to increase the acidity in my stomach.  (No history of ulcers.)  You can get carbonated water or various bottles waters if you'd like something more "special".

Please, we just want you to take better care of yourself.  (Maybe you can have the Diet Pepsi in moderation--after you get your situation under control.)  No more hospitals!  

You would make these changes if it were for one of your children...

squirmingitch Veteran

I would also add regarding the Diet Pepsi..... even though that's "diet" Pepsi; isn't that still bad for diabetics?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



kim01 Newbie

Yes i do only drink diet pepsi. i would say closer to 11 or 12 cans aday. give or take from one day to the next. water is gross. i've been doing this since i left the house at 18. not the best but it works. i really am not too concerned with everyone being gluten free. like i said i only eat a handful of foods that need to be cooked. don't really like any kind of baked good, crackers, bread. i do eat white rice (brown is gross) and bake potatos. i have my own butter and gluten-free soy sauce. i am just not a big food person. thanks for all the advice. hubby is huge in helping me, and would do anything i needed (if he knew i wanted it to happen) i'm a bit spoiled and get everything i want. he supports and encourages where he needs to. 

LookingforAnswers15 Enthusiast

Hi Kim01,

it is so great that you have opened your home to these children! 

I just wanted to also comment on Diet Pepsi. It is up to you whether you continue drinking it or not but I really think you might want to try to limit your Diet Pepsi intake to 1-2 cans. I have to admit that I used to love diet pepsi and drank 3-4 cans a day and sometimes more when I worked late. That combined with some processed food that I though was healthy was probably not good for me. I stopped drinking soda when I began gluten free diet. Occasionally I miss it but I do not allow myself to think about it. You can be creative when making lemonade, smoothies, fresh juice if you do not like water. Since you said that you drink 11-12 cans, that is between 3,6-3,9 liters (or close to a gallon, if I converted it correctly). We are supposed to drink 1,5 liters of water daily (I am not always good at that but I try to remember). So, while you are drinking enough fluids, even more than required, it is a sugary drink. 

I was hospitalized for dehydration prior to my celiac diagnosis and had to receive intravenous fluids. Doctors told me that I also had to drink at least 2l of water at that time and although I also did not care much for water, I  made myself drink it. We all make our own decisions so it is up to you to decide whether you continue to drink Diet Pepsi so much, but I think it would be better for your health to drink less. Have your doctors said anything about drinking diet pepsi? I hope you feel better soon. 

ravenwoodglass Mentor

There are folks that will have nasty reactions to large, or at times very small (case for me) artificial sweeteners.  They can also be quite addictive. It would be a really good idea to cut down your intake, or ideally stop the diet soda altogether. It could be contributing to your need for hospitalizations. Or even be the root cause for them.

manasota Explorer

KIm01, in your above post you state, "not the best but it works" in reference to the Diet Pepsi.  But in your first post, you describe your body as repeatedly screaming that it does NOT work.  The things you are doing are NOT working.  

You won't get a different result until you try different choices.

Also, in your posts, you keep thanking us "for letting you vent".  But you are not ranting; you are simply describing what is happening with your health.  You have every right to talk about your health issues, even though some people in your life might not want to listen.  We will listen.

I would suggest that you might treat yourself as well as you treat others.  (I have had a very hard time learning to do this myself.  I consistently treat everyone else better than I treat myself.  My husband frequently has to remind me to treat myself better.  Even though I'm old,  I still have a lot of trouble with this.)  You are not alone; and you don't have to "hate this disease it sucks" (as you say in your first post).  Energy put into hating won't help you get better.

Sorry to be so critical; but you don't need any more "yes" people.  I'm worried about your health.

ERH Newbie

Two comments that may help.  I am a refractory-sprue patient (Celiac to the extreme) in remission, so the gluten-free diet is finally working for me now.  The damage to my villi, however, has created some additional problems that have to be carefully managed.  Artificial sweetners (any of them) and lactose in even small amounts creates an almost instant and constant diarreah.  Lactose tablets help but must be taken with the first bite of food.  Personally, I think going lactose-free is even more difficult than the gluten-free diet.  Think: lactose is an integral part of milk, butter (even many butter-substitutes have a dairy component), cheese (including cream cheese, cottage cheese, almost all sliced or blocks of cheeses), many salad dressings, and yogurt,  When you check the ingredient list of almost any prepared food, it will have one or more of those lactose ingredients.  There are lactose free products: Lactaid milk, Lactaid cottage cheese, etc., Challenge lactose-free butter (real butter), imitation lactose-free spreads, and cheeses that are specifically labeled lactose-free or that show a "lactose 0%" on the ingredient list.  

Certain foods also refuse to be digested correctly and the diarreah returns -- chocolate, always -- green leafy vegetables (salad, broccoli) sometimes, if I eat a large helping.

Celiac is a very inconvenient and frustrating disease and controlling it takes a lot of effort.  I, too, lost 35+ lbs to a low of 89 lbs before a diagnosis.  The wonderful Celiac clinic in Boston saved my life, but couldn't eliminate the need for a strict gluten-free diet ... with the lactose-free complications thrown in as one of the burdens of being Celiac.

Good luck!  I hope this note will help you and others who are experiencing a similar problem.     

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      5

      Awaiting dermatitis herpetiformis confirmation following biopsy

    2. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

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

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

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

    4. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

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

    5. - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,257
    • Most Online (within 30 mins)
      7,748

    KariNoMoreGluten
    Newest Member
    KariNoMoreGluten
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • suek54
      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      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
      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
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.