Are you alone in your gluten free journey? Are you unsupported by your family, friends, co-workers, doctor, and/or those closest to you?
It is never easy to change your diet. When someone, like a doctor tells you it is medically necessary, it is complex. You know you need to, but may feel forced into making that change. Now, don’t get me wrong, it can be just as difficult if you have come to this decision through other means. Not having support makes it much more difficult.
A Medical Diagnosis
With a medical diagnosis, you at least have the doctor and others in the medical field on your side. (If you have the right doctors.) There are support groups and so much information to be found. It is extremely helpful when you have a definitive answer to why you need to be gluten free, through having a diagnosis.
If you have read very much of what I write, you know how important I believe getting a diagnosis is. However, it isn’t always possible. I feel it is important to warn people, to not decide they are NOT celiac, if they haven’t been tested. You CANNOT know for certain that it isn’t celiac without full testing.
Another complication is that testing isn’t perfect. The damage to the intestines can be missed, even if you have had biopsies. Damage to the intestines happens in patches, so if they don’t get the right patch, the damage is not found. You may need to be tested more than once or twice. Having a firm diagnosis helps you to know exactly what you are dealing with.
Gluten free without an official diagnosis
This can be a hard route to go. Just because you test negative one time doesn’t mean that you are free and clear, especially if the disease is in your family. Family members of those with celiac, should have periodic testing whether they have symptoms or not.
If you are lucky and look really hard, you may find a doctor who understands that diagnosis can be tricky and some people suffer from gluten intolerance or other conditions.
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Reasons people don’t get a firm diagnosis
Not enough biopsy samples
Too expensive to be tested/ no insurance
If it is a child, doctors are very reluctant to continue testing without a positive blood test.
There aren’t tests for intolerance. Everything else is ruled out, in order to get the diagnosis of non-celiac gluten intolerance.
Many people don’t understand, other diseases also respond better to treatment, when gluten free: crohn’s and thyroid disease are two great examples.
Unsupportive Family Members
This can be harder than not being supported by your doctor. Not being supported by those you love makes this dietary change not only challenging but sometimes impossible!
I have seen parents, unsupportive of their own children who need to be gluten free and tell them figuring out is their responsibility. I’m talking about children 14 or younger. Or even worse, not believing they need to be gluten free and continuing to feed them gluten, thinking that a little bit won’t hurt.
I know spouses who tempt and torment the one needing to be gluten free; it is never fun to live with a bully! Sometimes they even go so far as to make it difficult or impossible for the spouse to eat gluten free. This is medical abuse, your life and health is being put at risk of other diseases and complications related to celiac disease.
The prescription for celiac and gluten intolerance is eating gluten free!
What Can You Do?
Don’t go gluten free before being tested.
Keep looking for a doctor you can trust and who will listen to you.
Always get copies of your blood work- be involved in your medical journey. You are your own advocate!
Ask questions to doctors and nurses. Even if they get annoyed.
Dealing with family
Stick to your diet regardless of what family is doing.
Learn everything you can about being gluten free and how to do it safely in a shared kitchen.
Cook and shop for yourself.
Try to educate family members about your medical condition and how the gluten free diet is the prescription.
*It is much harder if you are a child or a spouse in a controlling relationship. You may want to seek counseling, ask your doctor for help/resources, or do what you can to change your environment.
Join a local support group. If you don’t have support at home or with your family, a support group can be especially helpful to talk about issues and difficulties.
Many places have Facebook groups in different areas. There might be one near you or you might consider starting one up, so you can help and support one another. Example: Gluten Intolerance Group of Utah County (Gluten Intolerance Group is a national organization and trademarked. Do not use their name if you begin a group, unless it is with them and okayed by them.) or Gluten Free in Utah County
Be consistent with your diet. If you don’t take it seriously, neither will anyone else.
An advocate: pleads a cause for another, defends or maintains a cause, and/or supports or promotes the interests of a cause or a group. (Merriam Webster Dictionary)
Why does the gluten free community need more advocates?
Another national chain has jumped on the gluten free bandwagon, but not to for the purpose of helping the gluten free community! They are totally in it for the money! Their gluten free pizza is NOT for those who have celiac or severe gluten intolerance. This means they are simply catering to the gluten free fad dieters and leaving those that the diet was created for out in the cold!
This begs the question, then whom was their gluten free diet created for?! As if those with celiac, gluten intolerance, wheat allergies, etc. don’t have enough problems but now national chains are in your face creating menus for a group that has hi-jacked the gluten free diet!!!
Not only that, but on our local gluten free Facebook page people are okay with it?!!!
One person even commented that we are in the minority? How are those whom the gluten free diet was created for in the minority?! WHAT?!
This kind of response makes me feel like we are swimming upstream! It is hard to see this kind of attitude from those who should be advocating for proper gluten free procedures!
“I guess I just don’t expect any business to cater to my weird dietary needs. They are in the business to make money and maintaining a GF environment is costly.”
Weird dietary need? Maybe the gluten free community shouldn’t be referring to their own dietary needs as weird!
Catering to the gf community. . . Isn’t that exactly what they claim to be doing by offering gluten free?
Another person said: “I’m just happy they’re not advertising as something it’s not. There is no realistic way for them to avoid cross contamination. Even if they take every precaution, there is gluten everywhere there. It’s not possible without extensive reno. That they know to warn you says they understand precautions, but that they also know their limits.”
Hold on there! They are advertising having a gluten free pizza! (As far as I know they aren’t disclaiming it as loudly as they are touting that they now offer gluten free pizza.) The part about it not being for those with celiac and those with severe gluten intolerance is in fine print! Oh and if they didn’t want to go through what it takes to offer it safely then they shouldn’t have decided to put gluten free pizza on their menu! This is disingenuous to the gluten free community!
Eating out is always a risk
We know that the only way to make sure we don’t get sick is by always doing our own food at home! However, we need a break, want to socialize, go to events and experience new restaurants, just like everyone else does! This dietary restriction can be very isolating!
Here’s what Chris Rich from the Gluten Intolerance Group had to say about the differences between those who have done gf right and the way Papa John’s has chosen to do gf:
“California Pizza Kitchen has a completely separate area where they handle gluten-free food preparation,” he said. “This includes dedicated gluten-free toppings, pizza cutters and prep stations. Pizza Hut was a little different in that certified gluten-free pizzas are only available in their stores that do not make their own crust on site. This eliminates the airborne flour that is the cross-contamination risk at Papa John’s.”
I believe national chains have a greater responsibility to do things the right way! They are trend setters because they have proven to be successful with their restaurants. Other restaurants will follow suit. Papa John’s is following the mistakes made by Dominos and several others. It is unfortunate for the gluten free community and here is why:
Bad- Gluten Free is a Problem for the Gluten Free Community as a Whole
Family and friends don’t follow or understand the gluten free issues let alone all of the medical issues involved in having a condition that requires a gluten free diet. It takes longer for those who are new to a diagnosis that includes a gluten free diet to get well and find accurate information. Add a bad option for gluten free and those problems compound.
People do assume that a national chain wouldn’t offer a gluten free option, if it wasn’t safe! (Who thinks of looking for the fine print?)
People who need to be gluten free but aren’t well educated or new to the diet aren’t aware of all of the issues (I see it all the time! People who will respond to posts about warnings of a product or a place that isn’t safe and will not only state that they have never gotten sick but dig their heels in about how safe it must be! Either, they have gotten lucky or they don’t realize that their symptoms can change or that there can be damage without having any symptoms at all. Being symptom free is NOT good enough to assume that you are unharmed! Damage to the small intestines can happen without having outward symptoms.)
Pizza bought for a party and the gluten free option turns out to be Papa John’s or Dominos! The person who arranged it things they have done a wonderful thing by providing a gf option for you. If you are aware, you know not to eat it, but what about your gf child or teen? What about those who are new to the diet and haven’t heard all of the controversy? What about the person who you have to tell you can’t eat the expensive food they bought just for you?!
Makes the gluten free diet appear to be more of a fad. (Again, who reads the fine print?)
Family, friends and neighbors who think you are over reacting because “Hey, it is gluten free!” or “A little won’t hurt you!”
Having more and more restaurants decide that less precautions are better than doing it right.
Still being left out of social situations because the gluten free option isn’t a safe option. (This makes my blood begin to boil!)
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What it means to be a gluten free advocate
This means that you study and fully understand the gluten free diet, its purpose and whom it was created for.
Be knowledgeable about celiac and gluten intolerance with accurate information!