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

Hello, Im New And I Need Some Help

nubgluten

By nubgluten
in Coping with Celiac Disease

Recommended Posts

nubgluten Newbie
nubgluten
Posted

Hi i am Harisa, I have been diagnosed with Celiac Disease for a little over a year now. I do my best on eating gluten free, i only buy products that say they are gluten free, or are obviously gluten free such as rice or fruits and veggies. I feel like most of my personal products are safe for me, but i am not 100% sure. Lately I have been doing alot worse and I dont know why, my stomach feels bloated, acidic, and it feels everything in my stomach is getting moved around and it is very painful and hard to explain. I dont really understand what is going on but I havent felt this bad in a long time. I have really no idea what could be happening, i am in Vienna Austria on holiday, and i am eating gluten free products and they are marked but i feel terrible, i drink soy milk and eat rice, panda puffs, i do eat cheese and some dairy products.... Anyone have any ideas for me?

Thank you,

Harisa and Nicholas.

and why is everything pinned on this forum and my topic is not... i am very confused.

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

Celiac.com Sponsor (A8-M):


Welda Johnson Newbie
Welda Johnson
Posted

Hi Harisa and Nicholas,

I hope I can help. My name is Welda, and I am 63 years old, and have had Celiac symptoms since age 8, though of course none of the many doctors I went to for my severe asthma ever mentioned Celiac. In my 30s I was so sick that I started eliminating foods--first wheat and all other grains, then all milk & dairy, then egg whites, then yeast, and, finally, meat, fish and poultry.

You say that you are ingesting milk and cheese. That could cause problems. Even casein and whey (milk derivatives) have caused problems for me, even when they were in "gluten free" foods. I want to tell you that as time goes by, you will become more and more sensitive to the foods which your body doesn't like. Our bodies are so gracious to always let us know what we need and don't need, even responding to anger, fear, and stress.

As a vegan now, I eat all fresh fruits and vegetables, beans, peas, corn, soy, and lots of salads with celery, red bell peppers, green onions, cucumber, etc. I eat corn tortillas and corn tamales with refried beans, a combination that I learned is a complete protein, and corn spaghetti with refried beans, green Ortega chiles, etc. I eat Stevia as a sweetener, which comes in a packet like Equal, but is made from a plant from Paraguay, so is all natural and has no calories. Lots of water usually rounds out my daily intake.

One other thing--for me, food combining has become very important. I eat only fresh fruit for breakfast, and mix it with nothing else so that it digests properly. For lunch I have salad with the ingredients I mentioned above, then move to the starches, beans, tortillas, etc. Maybe this will give you a little more information. Welcome to the forum! Best wishes as you discover the foods that work well for you. Welda

JNBunnie1 Community Regular
JNBunnie1
Posted
Hi i am Harisa, I have been diagnosed with Celiac Disease for a little over a year now. I do my best on eating gluten free, i only buy products that say they are gluten free, or are obviously gluten free such as rice or fruits and veggies. I feel like most of my personal products are safe for me, but i am not 100% sure. Lately I have been doing alot worse and I dont know why, my stomach feels bloated, acidic, and it feels everything in my stomach is getting moved around and it is very painful and hard to explain. I dont really understand what is going on but I havent felt this bad in a long time. I have really no idea what could be happening, i am in Vienna Austria on holiday, and i am eating gluten free products and they are marked but i feel terrible, i drink soy milk and eat rice, panda puffs, i do eat cheese and some dairy products.... Anyone have any ideas for me?

Thank you,

Harisa and Nicholas.

and why is everything pinned on this forum and my topic is not... i am very confused.

Harisa, where are you from? It may be that Austria has different definitions of what gluten-free means. For example, in the UK, there can be a very small amount of gluten, which most of us still react to, so we don't trust things that say gluten-free from the UK sometimes. You might want to stop eating any of the 'replacement' foods while you're there and stick to meats, fruits, veggies, rice.

Judyin Philly Enthusiast
Judyin Philly
Posted

WELCOME

I found after going gluten-free for 5 months, it was the soy and dairy that kept me from getting better after the 5 months of feeling great.

There were great tips here.

Also, you might want to check out some of the articles that Scott who runs this forum, has up on the home page.

You might find some things that will shed some lite on things specific to you.

good luck

Judy

nubgluten Newbie
nubgluten
Posted
  • Author
WELCOME

I found after going gluten-free for 5 months, it was the soy and dairy that kept me from getting better after the 5 months of feeling great.

There were great tips here.

Also, you might want to check out some of the articles that Scott who runs this forum, has up on the home page.

You might find some things that will shed some lite on things specific to you.

good luck

Judy

thanks for all the feedback guys, i have been eating gluten free marked foods here and i might try to stick with fresh stuff now, and could u link me to scotts articles or let me know where i could find them.

thanks again and im happy to be on these boards :D

Judyin Philly Enthusiast
Judyin Philly
Posted
thanks for all the feedback guys, i have been eating gluten free marked foods here and i might try to stick with fresh stuff now, and could u link me to scotts articles or let me know where i could find them.

thanks again and im happy to be on these boards :D

just got to the top of this forum page and go to 'home'

or go to https://www.celiac.com/

and all the articles are on the left side of the page.

good luck

whitball Explorer
whitball
Posted

To figure out what you are reacting to, you will need to eat fruits, veggies, meats. then add other things, one at a time. I found that I react to corn and rice. Keep track of what you introduce and you at some point will find out what is causing you to feel bad. Good luck to you.

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,258
    • Most Online (within 30 mins)
      7,748
    Tdodge
    Newest Member
    Tdodge
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • suek54
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By suek54 · Posted

      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later.  The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied, no chance if recovery there. But I am in touch with some secondaries, so something to bear in mind. .  Niacin B3 Very interesting too. Must have a good read about that.  Im sure lots of questions will arise as I progress with dermatitis herpetiformis. In the mean time, thanks for your help.
    • knitty kitty
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By knitty kitty · Posted

      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
    • suek54
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By suek54 · Posted

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

      By trents · Posted

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

      By catnapt · Posted

      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!!! 
×
×
  • 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.