Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

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

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

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

mushroom Proficient

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

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

dilettantesteph Collaborator

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

oops my bad.

keeponsingin Newbie

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

keeponsingin Newbie

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,411
    • Most Online (within 30 mins)
      7,748

    Nstvns03
    Newest Member
    Nstvns03
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.9k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Nstvns03! Immunoglobulin A Qn is not a test for celiac disease per se. It's what we commonly call "total IGA" and it is a test used to determine if there is IGA deficiency. If there is IGA deficiency, the individual IGA tests done to look for celiac disease are going to be artificially low and this can produce false negatives. Obviously, you are not IGA deficient. But the question needs to be asked, had you already been practicing a reduced gluten diet when the blood draw was done for these tests?
    • Nstvns03
      I had celiac testing done and the only think in that test that was high was the immunoglobulin A Qn results was off the chart high at 419. Does this confirm celiac if everything else but that test was normal? 
    • Itsabit
      Thank you for clarifying! Something to possibly consider as I continue on my “non-gluten” quest and if I do not improve, but being new to this whole realm and already overwhelmed and stressed, this would have pushed me over the edge right now. 🥹
    • trents
      Thanks for the information, knitty kitty. It helps bring some clarity and reduces the confusion that misinformation such as is contained in this thread title introduces into the community. People new to the celiac experience are already struggling to wrap their minds around not being able to eat just wheat, barley and rye any longer. We don't need to unnecessarily add to the list on "no no" foods. And I saw where you added this same post to the thread on oats as well.
    • FayeBr
      Thank you for your reply. 56 years! Wow!  It seems we all suffer for many years before this diagnosis and I’ll stay hopeful that I can try more foods after healing. I have a very limited diet at present. Onwards and upwards 😊
×
×
  • Create New...