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

Recently Diagnosed - Need Help!


gfwarrior

Recommended Posts

gfwarrior Rookie

I was diagnosed last week with Celiac's Disease. It explains alot!! I was told over the years that I have IBS and finally a new doctor I saw ordered the Celiac blood work and biopsy. Now that I know what my problem is, I'm on my 4th day gluten free and feel so confused. I have 3 youngs boys and my husband who are not gluten-free and I'm not sure what the best way of going about organizing my kitchen. Also, is it okay to eat foods that are processed in a facility containing wheat? I love soy crisps but that disclaimer is noted under their ingredients. Any advice would help tremendously!

Thanks!


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



Celiac.com Sponsor (A8-M):



ShayFL Enthusiast

IN the beginning...stick with simple foods that are naturally gluten free. Once your symptoms are gone, you can try eating foods that say "processed in a facility...." and see if you react. BUT YOU HAVE TO GET WELL FIRST.

Most Celiacs have to cut out dairy for a few months while the villi heal. The tips of villi are what digest dairy. SOY is a major problem for most people in general. You wont want to hear this, but I would cut soy out too for now. Once you are all healed, you can add it back in and see if you digest it well.

For now: Plain meats, pure spices, fresh, frozen veggies and fruits, whole grains like rice, corn, buckwheat, millet, quinoa, potatoes, sweet potatoes, nuts and seeds.

After you heal you can try some of the premade gluten free products. But many have problems with them at first. YOU NEED TO HEAL FIRST.

Did I mention that?

All of this is VERY CHALLENGING, but you will work through it.

Also, your children should ALL be tested for Celiac. 50/50 chance you gave them the gene and if your husband also has a gene, the odds are even greater.

It is easiest to have a gluten free household, but if you cannot do that, then you can do what I do (gluten foods eaten outside only). Or ask around on the forum. Many people run a "mixed" household. I dont.

Wishing you well!

Green Eyes Rookie

Hey gluten-free Warrior,

My family chooses to continue eating gluten, my child is 11 years old and has a very good understanding of the rules. There are many meals you can cook to feed the entire family and they will never know they are eating gluten free. Many recipes can be gluten free just by changing a few ingredients or purchasing different brands. It does work. But when they want a certain meal with gluten my husband is more than happy to cook the meal. It doesn't bother me and I can have what I want and not have to cook for them.

I also meet a lady which felt like feeding her family gluten free was to expensive (she bakes from scratch). She prepares her meal first and then prepares a meal for her family after that. She loves to bake and it isn't a burden for her.

In time, you will find what works for your family and it will become routine and much much easier!!!!

Jennifer

samcarter Contributor

gfwarrior,

I am the only gluten free person in our household, and I do the cooking and baking for my family. As mentioned, the easiest way to avoid cross contamination is to prepre the gluten-free food first, then the glutenous food. That way, you don't have to wipe off everything and clean it before preparing the gluten-free food.

Danna Korn's book "Gluten-Free Cooking for Dummies" (and "Gluten Free Living for Dummies") is a great resource; its' one of the first books I bought. She talks about keeping a "mixed" kitchen, how to avoid cross contamination with condiments (buy squeezable jelly, mayo, mustard, ketchup, for instance), and how to prepare meals everyone will enjoy that are adaptable to either gluten free or glutenous.

I am still working on finding my "gluten free" shelf in the pantry. A place where I can keep my gluten free flours or mixes, and snacks so the kids don't think they're open to all. Some recommend labeling foods with colored stickers.

As mentioned, stick with naturally gluten free foods--fruits, veggies, rice, quinoa, potatoes, meats.

But since you have a definitive celiac diagnosis, I would really urge you have your kids tested. Even if they don't have active celiac, if they have the genes that predispose, later down the road, they could develop the disease (all it takes is exposure to gluten and a stressing factor).

Educating GF Newbie

:rolleyes: Hi GFWarrior:

Think of the bright side of things...You Will Get Better. If you are no longer poisoning your body with gluten. I am a nonceliac mom with my husband and 3 out of 4 children diagnosed with Celiac. Interesting: All the Males in our house ARE CELIAC. I do most all of the cooking and baking (always from scratch). We all eat gluten free supper together. I do keep both regular and gluten free bakery in the house. I label gluten-free on all gluten free bakery. If in doubt: DON'T EAT IT. ASK FIRST. That's what we say in our house.

It is possible to have a "mixed" house. There are many meals you can make that can be made into gluten free by just changing some of the ingredients to suite your needs. I find it easier to all eat the same meal for supper. We all eat a gluten free meal. Breakfast: to each their own, cereal, toast, eggs, etc. we do both gluten-free and not gluten-free. Lunch: sandwiches, I use reg. bread, they use gluten-free bread, etc. or there are left-overs from supper the night before. We've all survived for 4 years.

We DO SEPARATE: toasters, butter dish, peanut butter jar, etc. These things are to hard to keep from cross-contamination. So use separate containers. Label one gluten-free. And DO NOT SHARE THEM.

*****GET YOUR CHILDREN TESTED!!!!!!!! THREE OUT OF OUR FOUR ARE POSITIVE CELIACS. They may not have symptoms, but could still test positive.

My husband is from a family of 15 children. Ten of those 15 are affected with gluten intolerence.

Hope this helps a bit.

Educating gluten-free

Darn210 Enthusiast

Hi gluten-free Warrior . . . welcome to the forum!!

We maintain a mixed household. All items in the pantry are gluten free. You will find that most items can be bought in a gluten free version such as Progresso Creamy Mushroom soup instead of Campbells Cream of Mushroom, Great Value Brand AuGratin Potatos instead of Betty Crocker . . . you get the drift. We have one cabinet that has all the gluten stuff . . . the bread, the cereal, some snack crackers and cookies. The rule in the house is that if my daughter (the only Celiac) starts having problems with cross contamination, then I will take the whole house gluten free . . . and I repeat myself frequently :lol: The meals that I cook are all gluten free. It is really very easy to do with just a few substitutions. All baking that I do is gluten free. I'm not willing to have poofy wheat flour floating around in the air and settling everywhere. And like others have said, we maintain dual sets of butter, cream cheese, peanut butter, etc.

My daughter does not appear to be overly sensitive. We don't have a problem with "shared facilities" items. She was lactose intolerant in the beginning and took a lactaid chewable for a couple of months. There's no right answer . . . some people have to give up dairy . . . some give up soy, too. Some can't have "shared facility" items. It depends on the individual. My personal opinion is that it is related to how long someone went undiagnosed. The only way you will know is trial and error. . . and keeping a food journal may be helpful if you get to the point where you're feeling better but something in your diet is still bothering you.

gfwarrior Rookie

Thank you all for your advice. I'm still trying to figure this all out. I am going to have to keep a mixed kitchen because I don't want to be a burden to anyone else. My kids are too young to understand and I don't want to "cheat" my husband out of the foods he loves and is used to eating.

Has anyone found a website or book that gives an easy to follow food shopping list I can utilize? I'm trying to save some time when food shopping by not having to read every label so I'm looking for any suggestions on what brands are gluten free?

Thanks again for all of your help! This forum has been such a wonderful experience for me!


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



Celiac.com Sponsor (A8-M):



Educating GF Newbie
Has anyone found a website or book that gives an easy to follow food shopping list I can utilize? I'm trying to save some time when food shopping by not having to read every label so I'm looking for any suggestions on what brands are gluten free?

Thanks again for all of your help! This forum has been such a wonderful experience for me!

gluten-free Warrior:

What you need to help you get started is the: CSA Gluten-Free Product Listing Guide. cost: @$30.00 this book contains product names/brands that are safe (as of publication date) some products change their ingredients, so you still have to be careful. General Mills brand 'Rice Chex' are now safe, they just changed an ingredient in April 2008 to make them gluten-free.

Contact: CSA (Celiac Sprue Association) PO Box 31700 Omaha, Nebraska 68131 phone: (877) CSA-4-CSA can also visit the web at www.csaceliacs.org

If you become a member you will receive newsletters called "Lifeline" it contains interesting material for celiacs.

Good Luck, Educating gluten-free

gfwarrior Rookie

Thank you Educating gluten-free! I just ordered the Listing Guide and became a member. That will definitely help me get started!!

ravenwoodglass Mentor

The CSA also has a great starting the diet guide, here is a link:

Open Original Shared Link

gfp Enthusiast
gfwarrior,

I am the only gluten free person in our household, and I do the cooking and baking for my family. As mentioned, the easiest way to avoid cross contamination is to prepre the gluten-free food first, then the glutenous food. That way, you don't have to wipe off everything and clean it before preparing the gluten-free food.

Of course if you do this you need a complete set of sponges, dish towels, cloths etc.

Should one accidentally be used for gluten then it needs to be somehow identified.

I guess you could use some dye and mark the 'glutened' towels and cloths ?

jparsick84 Rookie
I am going to have to keep a mixed kitchen because I don't want to be a burden to anyone else. My kids are too young to understand and I don't want to "cheat" my husband out of the foods he loves and is used to eating.

You ARE NOT A BURDEN! You have a right to have a safe kitchen, just like everyone else in your household. I was told, right after diagnoses, that everyone in my house needed to be gluten-free for at least a month, so I could heal without all the CC that inherently goes along with a shared household - not only surfaces and toasters but also sponges, wooden utensils and shared condiments. And as far as your husband goes - what about all the foods YOU loved and YOU were used to eating??? I'm not saying that he has to be gluten-free as well, but a talk with him about your feelings ("It's really hard for me to watch you eating pizza in front of me, honey") might reveal that he doesn't mind having those foods elsewhere - someone else mentioned keeping the gluten foods outside, which is a great idea. And you might find that your kids like being gluten-free - and if it turns out they have the gene, it will be easier for them down the road if you have "prepped" them in terms of living gluten-free.

I'm trying to save some time when food shopping by not having to read every label so I'm looking for any suggestions on what brands are gluten free?

Sadly, with companies changing ingredients and facilities all the time, there is no way around this one. The list you ordered is only accurate at the time of publication, and as a newbie, you're going to have to read every label. Think of it as practice - spend the 2 hours now to be better able to quickly identify "bad" foods later.

Wal-Mart brand items always have "Gluten-Free" in big bold letters at the bottom of their ingredient list if it's safe, and it also always mentions if it was produced in a shared facility.

Good luck!

ShayFL Enthusiast

I agree that this has been really good for my DD to learn to read labels and be "prepped" so if she develops health issues and needs to cut out gluten she will already be so close to there that it will not be traumatic.

I dont feel like I am a BURDEN to anyone in my family. THEY ALL WANT ME WELL AND HEALTHY.

My husband said he would do whatever it took. He eats his gluten away from the house. He doesnt even bring in gluten foods anymore. He doesnt want to eat outside. :) And he doesnt care.

And my daughter has been the greatest. Checking labels for me. Letting me know if some little "barley malt" tries to sneak in. She eats her pop tart treats on the porch. But really she is like 90% gluten-free. She loves my gluten-free cookies, cakes, etc. She tells me all the time how much better it is to be gluten-free.

I made fresh pipping hot gluten-free blueberry muffins this morning...he is delighted with the change because I am cooking/baking more and becoming an EVEN BETTER cook.

It has been a win/win in my house.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,901
    • Most Online (within 30 mins)
      7,748

    tessycork47
    Newest Member
    tessycork47
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.