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

I'm New To The Forum

Walter S

By Walter S
in Coping with Celiac Disease

Recommended Posts

Walter S Explorer
Walter S
Posted

Hello everyone. I am new to this forum. I have a double diagnosis that I got after being out of work and sick for months, and having tests, etc. I have been diagnosed with Crohn's disease and celiac Disease. Yesterday (Easter), I was at my parent's house for the hoiday. I have only been on the gluten free diet for a week now. There was so much food all over the place that everyone was eating and enjoying that I could not have- which was tough. So, I gave in and I ate a ver small piece of chocolate. I got sick from it so bad that I had to leave and come home early. I've been having diarrhea with bleeding, nausea, vomiting, and awful exhaustion, weakness/dizziness, etc. I called the GI Dr. this morning. They say he'll be in tomorrow and they will leave a not for him. If things get bad/continue then they say go to the hospital. I have had enough of this whole thing already, and from what I understand, I have to eat gluten free for the rest of my life! Any advice would be helpful. I don't feel good at all today!

:angry::(

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

Celiac.com Sponsor (A8-M):


Jestgar Rising Star
Jestgar
Posted

I'm sorry you feel crappy today, Walter. It does get better.

The first few weeks/months are a bit overwhelming, but once you get some things you like and trust, reading labels in the grocery store becomes less of a trial (although no less tedious). Start with well cooked veggies and rice and add on from there.

And welcome to the board!

dlp252 Apprentice
dlp252
Posted

Hello and welcome Walter! I too am so sorry you are feeling so badly! I agree, it does get better eventually but is quite tough in the beginning.

chrrsn Newbie
chrrsn
Posted
Hello everyone. I am new to this forum. I have a double diagnosis that I got after being out of work and sick for months, and having tests, etc. I have been diagnosed with Crohn's disease and celiac Disease. Yesterday (Easter), I was at my parent's house for the hoiday. I have only been on the gluten free diet for a week now. There was so much food all over the place that everyone was eating and enjoying that I could not have- which was tough. So, I gave in and I ate a ver small piece of chocolate. I got sick from it so bad that I had to leave and come home early. I've been having diarrhea with bleeding, nausea, vomiting, and awful exhaustion, weakness/dizziness, etc. I called the GI Dr. this morning. They say he'll be in tomorrow and they will leave a not for him. If things get bad/continue then they say go to the hospital. I have had enough of this whole thing already, and from what I understand, I have to eat gluten free for the rest of my life! Any advice would be helpful. I don't feel good at all today!

:angry::(

Hi Walter,

I am sorry that you feel so bad today. It is very difficult to go into a gluten free diet. My little girl, who is 2, has Celiac's Disease and we have all gone gluten free to make sure that she never feels different when she is at home. I know the trouble that comes from picking up something in the supermarket that you have eaten all of your life only to find that it is now something that you cannot eat. But it gets easier and you learn to like the gluten free food and you learn to recognize the things that you can eat and the ones that you cannot. My little girl, like you, suffers severely when she does eat gluten. The pain she feels and the pain that I am sure that you feel today, when she eats something that is gluten containing cannot be worth the second of joy that you get eating that comfort food. There are lots of chocolates and sweets and treats out there that you can eat. I found that caramilk bars are okay and actually the gluten free pretzels that you can buy are really good. You should also see if there is a support group in your area for Celiac's sufferers. The support and recipe exchange and access to information from others in your situation would be amazing.

Things will get better and I hope that you too will FEEL better soon.

Good luck. ;)

RiceGuy Collaborator
RiceGuy
Posted

I would also echo the comments made thus far. It truly does get easier, and you won't feel nearly as bad about having to avoid certain foods. Especially with the new found sense of well-being you'll enjoy. There are numerous gluten-free foods to take the place of those made with wheat and related grasses. Breads, pastas, cereals, etc are all still there for you. I know it can seem overwhelming at first. We were all where you are at one point.

Do check out Open Original Shared Link pastas. They are widely regarded as the finest gluten-free pastas around, and many on this board (including myself) will tell you they taste every bit as good as wheat pastas. I think they are actually better. You could serve it to your gluten-eating friends and they'd never know the difference!

Truthfully, I have far more variety in my diet now than I ever did before going gluten-free. The typical American diet is very limited, though most people never realize it. For instance, there are at least twenty different grains, legumes, and such from which flours are made that are fairly common in the gluten-free diet. How many grains are used for flour in the typical American diet?

Also, making your own breads, pizzas, etc will really go a long way in terms of variety and food value, not to mention cost savings. Even if you don't happen to be a proficient cook, you can do quite a bit, and the members of this board can help you get there.

Susanna Newbie
Susanna
Posted

Hey, Walter--sorry about your double diagnosis. The good new about your celiac diagnosis though, is that the cure is in the food--no meds, no surgery--you can eat to treat, and soon feel better. Here are some key coping strategies to get you started.

1. Know that you will grieve your old favorite gluten-filled foods. You will probably grieve a lot at first (a couple of weeks after I got diagnosed, they were toasting bagels I couldn't eat at work, and they smelled so good I had to leave my department for a while, it was too hard to be around it!) I actually tear up when I see a brioche sometimes still. Grieving is normal. People around you will eat treats you can't have and you will feel sad and isolated. Strategy: stock your car, office, purse, backpack, secret drawer at home with gluten-free treats you can reach for any time you are feeling deprived. This really helped me. I recommend Baby Ruth Bars, Snicker Bars, Lara Bars, Dove Dark Chocolate, meringue cookies, macaroon cookies (read labels), Butterfinger, Reeses Peanut Butter Cups. You get the idea.

2. Know that it will take time (months, probably) to figure out what to eat (it took me 6 mos.) and during this time, it'll be kind of a daily challenge to plan meals. Every time you go to the store it'll be a challenge to choose groceries. Strategy: Budget more time for meal planning, shopping and cooking. When you go to the grocery store, plan on an hour--don't bring kids or friends. Go the bathroom before you start grocery shopping. Bring your reading glasses--read every label. The good news is, THIS GETS MUCH BETTER OVER THE NEXT SEVERAL MONTHS AS YOU GET USED TO TO THE DIET.

3. It may take a while for your gut to heal, depending on how damaged it was at the time you went gluten free. So, you are going to have to be patient with your body--some people feel better immediately after going gluten-free, but most of us take longer than that. Don't give up if you don't see instant results. Strategy: Maximize your general health by getting enough rest, water, exercise, and limiting stress. Maximize your digestive health by limiting foods that are hard on the gastrointestinal tract until you're feeling better: limit irritants like dairy, caffeine, alcohol, and fried foods--these are all hard to digest--go back to them when you feel your gut is recovering.

4. Accept right now that it will be YOUR job to teach those around you about your diet

UR Groovy Explorer
UR Groovy
Posted

Hi Walter,

Welcome

It's a wild ride. Your life will probably change in a lot of ways, and things will become a little clearer - and then, a little unclear - and then clear again - and so on...

There are a lot of people on this ride. This forum can help fasten your seatbelt, or warn you of an upcoming loop de loop.

Hopefully you won't sweat it too much - I sweat it sometimes, but, overall, it's not so bad. In some ways, it can be fun - like when you make your first loaf of gluten-free bread, or have a first taste of Redbridge Beer, or brag about your last trip to the bathroom.

Fasten your seatbelt & enjoy the ride, Walter

kat

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

Celiac.com Sponsor (A8-M):


TinkerbellSwt Collaborator
TinkerbellSwt
Posted

Welcome Walter.. it does get better. I know that is just a repeat of all that has already been said, but I cant stress it enough.. you will get better. It takes time and practice, you will be amazed on how much better you feel...

I hope you feel better soon!

Walter S Explorer
Walter S
Posted
  • Author

Thank you for the advice everyone. It is a big help and it is nice to know that there are support groups out there to help! The double diagnosis is truly a pain and I never know which thing is flaring on me or if it's both at once sometimes...

Archived

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

Go to topic listing

  • 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. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    5. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748
    KABoston
    Newest Member
    KABoston
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • 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.