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Doing A gluten-free Trial

keeponsingin

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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!

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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.

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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.

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      how much gluten do I need to eat before blood tests?

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    • catnapt
      how much gluten do I need to eat before blood tests?

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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