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

Doing A gluten-free Trial

keeponsingin

Recommended Posts

keeponsingin Newbie
keeponsingin
Posted

I went to the doctor today, and she said based on my symptoms (GI, headaches, fatigue and rash which she looked at), she is fairly certain that I am gluten intolerant and pretty much sees testing as something unnecessary [for me] based on what I told her and what she saw and that the true test anyway is going gluten-free for awhile and seeing if it clears things up.

So now I have to buy a whole bunch of new food since most everything I have is laden with gluten...I have tons of pasta and bread and crackers etc. Fortunately, I love cooking, and I love fruits and vegetables, so I'm going to try to eat mostly fresh foods that I cook myself rather than switch over completely to gluten-free substitutes (although I will have to find a pasta...that's one of my favorite foods)! Any suggestions for that? I can live without bread. I actually don't eat it much anyway. I just keep it around in case I'm in a bind and need something to eat that I can make quickly and take with me.

This is going to be a very big change for me, and hopefully it works out okay. I'll probably now use more of my food budget from my parents (I'm a college student living in an apartment with no meal plan) since gluten-free foods are much more expensive than regular ones.

Wish me luck!

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

Celiac.com Sponsor (A8-M):


shadowicewolf Proficient
shadowicewolf
Posted

Eh, if you eat whole foods and a lot less of processed stuff it generally is cheaper from my experience.

I love ancient harvest quinoa pasta.

keeponsingin Newbie
keeponsingin
Posted
  • Author

I don't know...fresh fruits and vegetables are quite expensive!! At least around here.

mushroom Proficient
mushroom
Posted

The one thing I would ask her is, what diagnosis is she prepared to give you if your symptoms resolve on the gluten free diet? Celiac, or non-celiac gluten intolerant? At the moment there is still a big distinction made between the two.

keeponsingin Newbie
keeponsingin
Posted
  • Author

I'm not sure. But how much does it actually matter?

dilettantesteph Collaborator
dilettantesteph
Posted

It matters because if you have problems later on, another doctor might not believe that you have celiac disease/gluten intolerance and want to give you medications for all sorts of other things rather than work with you on your diet. You should get tested before trying the gluten-free diet. It is very hard to go back once symptoms have resolved because it hits you much harder. If you test negative, you can still try the diet, but at least you will have given yourself a chance to be taken seriously down the road.

kareng Grand Master
kareng
Posted

Reasons I can think of quickly to get a "real" diagnosis:

Future medical care

For kids - need a DX to get special food or accomadations in a classroom (like don't have to take cooking class in middle school)

College - not required to have a meal plan that can't accomadate Celiac or need a Diagnosis to get the gluten-free food

Hopsital/nursing home - most do a poor job of gluten-free currently but have no reason to even try without a diagnosis

Celiac is hereditary - doctors are more likely to look for it in your first degree relatives. your insurance should pay to get your kids, parents, sisters, tested every few years if you have that diagnosis

Taking food where ourside food is not allowed - with a medical diagnosis, you should be allowed to bring food into events that don't allow outside food (check ahead is best)

Just start with the blood panel. How does that hurt your doctor? Does not testing you benefit your doctor? Or if your rash is DH, get a dermatologist to biopsy it.

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

Celiac.com Sponsor (A8-M):


keeponsingin Newbie
keeponsingin
Posted
  • Author

I guess that makes sense. I would rather have to suffer later down the road and have to go back on gluten for a period of time though than do it now though. It's extremely hard being a college student and being sick all the time. I've already missed multiple classes because of it...so if eating gluten-free helps, I'll do it.

mushroom Proficient
mushroom
Posted

There is no reason to wait! Just tell the doctor to give you the darned tests, and to give them to you now!!!! Don't let her bully you. You should read some of the stories of people who went (or tried to go) back on gluten after being gluten free. Absolute living hell!!! There is no time like the present for the testing because there is no agreement for how long you have to go back on it and no way of knowing if you would be able to tolerate it. The body can get very cranky with you if it starts enjoying being gluten free and then you make it deal with gluten again :ph34r: This is your chance, right now.

keeponsingin Newbie
keeponsingin
Posted
  • Author

Well at this point, it's too late for that. I can't get into the lab today because they aren't open on Saturday, and I'm going back to school tomorrow and won't be back home for another 2 weeks...and I don't want to continue eating gluten for another 2 weeks...I've already missed way too much from doing that!

dilettantesteph Collaborator
dilettantesteph
Posted

I would rather have to suffer later down the road and have to go back on gluten for a period of time though than do it now though.

I thought that too. I had no idea how impossible it would be. I get so sick just from a tiny bit. It would be horrible to eat enough for testing.

keeponsingin Newbie
keeponsingin
Posted
  • Author

I thought that too. I had no idea how impossible it would be. I get so sick just from a tiny bit. It would be horrible to eat enough for testing.

If it's really that hard, then I probably won't do it. I can't keep eating gluten and being sick all the time...not as a college student. I'm only about a month into the semester, and I've already missed almost all the classes I can without my grades being lowered...and it's all from getting sick from eating. I'm pretty sure my doctor will be willing to give me a diagnosis though, if the trial proves helpful since she said that is really the only 100% definitive test for an intolerance.

Smylinacha Apprentice
Smylinacha
Posted

Hi' I have been gluten free for a month now. I have substituted breads with gluten free ones. All the junk food I loved I have substituted with Glutino brand sea salt crackers and their regular crackers. Their vanilla dream cookies are good too. If I want dip, I buy gluten free hummus. I tried tostitos and their gluten free dips but got sick on them. I eat lots of yogurt, brown rice, sweet potatoes, all meats and fish and rub with garlic salt and pepper. I drink angry orchard hard cider and new planet gluten free beer. My food bill is high because I now have to buy my stuff and get my husband his usual chips, doritos and junk food but I feel SO MUCH BETTER. There is a local place here that makes gluten free pizza which I will try tonight. I thought I would miss eating my normal stuff but so far so good. And I have no time to hang out and cook, and I never liked being in the kitchen so none of that has changed really. My Dr suggests I go get the tests but I don't want to go near gluten again. I feel too good to get sick again. Maybe some day there will be a test where we won't have to get glutened.

keeponsingin Newbie
keeponsingin
Posted
  • Author

My cousin who is gluten-free and his wife suggested Wegmans brand stuff...so I got some of the all purpose baking mix to try, and it's great! It works almost like regular flour, and doesn't taste much different! And I made scones with it, so it's not like I was making something and really masking it flavor. I also got the King Arthur gluten-free all purpose flour, and I used that with the scones as well, to make the balls with the dough, and it didn't really change anything either. So at least I now know that I can still enjoy some of my favorite baked goods without too much trouble!

I also love the Snyder's gluten-free pretzel sticks (I had them at a friend's house once -- she is also gluten-free), so I bought some of those. I also got the Mi-Del gluten-free ginger snaps to try, and they're great too!

Still trying out different pastas...I'm sure I'll find one I like enough to eat at least on a semi-regular basis.

1desperateladysaved Proficient
1desperateladysaved
Posted

I use kelp noodles. Even my family is good with it! I buy these at a health food store. There is also spaghetti sqush.

keeponsingin Newbie
keeponsingin
Posted
  • Author

Kelp? Like seaweed?? I can't do that...I've had bad experiences with seaweed. I work at the YMCA, and one of the most popular snacks for parents to bring their kids is dried seaweed which has an extremely strong and unappealing smell. It seriously makes me want to vomit!!

I also don't like squash of any sort...never have. I have corn pasta and quinoa pasta. The corn stuff is pretty good, but I haven't yet tried the other.

dilettantesteph Collaborator
dilettantesteph
Posted

If it's really that hard, then I probably won't do it. I can't keep eating gluten and being sick all the time...not as a college student.

I totally understand that. So, do what Mushroom said. Get the tests now. You can stop eating gluten and the tests might still work for a short time. If that doctor won't do it, find another one that will. Get it done as soon as possible before it gives you a false negative because you have been off gluten too long. You might not get another chance.

keeponsingin Newbie
keeponsingin
Posted
  • Author

I'm back at school, and that's about 2 hours away from home and my doctor. I won't be home for another 2 weeks, and I can't keep being sick all the time. I've already missed almost all the classes I can for the entire semester, and there's still 3 months left to it!

shadowicewolf Proficient
shadowicewolf
Posted

Mmmm, does your school have an oncampus clinic? Perhaps they can draw the blood and send it off? Might be worth looking into.

keeponsingin Newbie
keeponsingin
Posted
  • Author

I'm pretty sure they only do blood draws for mono. But I (and most other students at my school) try our best to avoid going there anyway since they're essentially useless.

mommida Enthusiast
mommida
Posted

You should also have a screening test for Lupus and thyroid. Thyroid issues can be affected by seaweed. Seaweed has iodine. You mentioned it and it has to be part of what is going on here with your health.

keeponsingin Newbie
keeponsingin
Posted
  • Author

I mentioned what? Seaweed? That was in response to the kelp suggestion. I said I can't do seaweed -- it disgusts me. I pretty much never eat it. I'll have the occasional spicy shrimp roll, but I would say that is only a few times a year.

mommida Enthusiast
mommida
Posted

oops my bad.

keeponsingin Newbie
keeponsingin
Posted
  • Author

No worries. It's easy to misread things, especially if you're quickly scrolling through a thread!

keeponsingin Newbie
keeponsingin
Posted
  • Author

I was doing so well...until today. I accidentally "glutened" myself :( I got ice cream, and didn't even think that there might be gluten in it. Not long after eating it, I felt awful, so I looked more closely at the label, and saw that the peanut butter cup part of it is manufactured on the same equipment as wheat products. This is Ben and Jerry's PB Cup ice cream, by the way.

Archived

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

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


  • Member Statistics

    • Total Members
      131,548
    • Most Online (within 30 mins)
      7,748
    Lunaluv
    Newest Member
    Lunaluv
    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

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.