Starting Gluten Free

[Boffin]

Hi All!

Having had a positive EMA blood test I've decided to go gluten-free from Sunday 1st July (giving me enough time to finish off some pasta from stock and buy some new wooden implements!).

I was scheduled for a biopsy to get the "gold standard" diagnosis but it has been cancelled and to be honest it was a great relief to me as the letter from the hospital detailed all the risks so quite frankly the thought of it terrified me and I'd rather just go gluten-free now than re-schedule. (By doing this I might forfeit some rights to support from the NHS - I'm in the UK but that's the decision I've made...)

Anyway, having now decided that this is what I'll do I wonder if anyone has any tips on what foods might help my intestines to begin healing most speedily. Are any foods particularly "gentle" or are there any that are best left a while as being more "agressive"?

Plans so far are to have Whole Earth Cornflakes for breakfast (but I wonder if milk might be a problem to begin with?) followed by (homemade) gluten-free bread (again, there is milk in it though!) Other breakfast thoughts that I've had include boiled egg (but I'm not sure that would be a good idea every day) and grapefruit (agressive?).

Lunch would be same as currently - sandwiches (ham/cheese, lettuce/tomato, mayonaise )- but using gluten-free bread, followed by a banana and an orange.

Evening meals I'm thinking of variations on a theme of meat/poultry, veg, rice/potatoes...

I'd just be interested to hear your thoughts.

Thanks in advance!

[aikiducky]

Milk can be a problem in the beginning, but I think you could start the way you are planning to, and see in a week or to how you are doing. Not everybody has a problem with milk.

OR you could look for almond milk or rice milk to use at least now in the beginning. Just be sure to read the label carefully, some of them aren't gluten free.

I like coconut milk (one in a carton, not a can, tastes fresher) and apple sauce, mixed together, with my morning corn flakes.

Welcome to the gluten free world!

Pauliina

[tarnalberry]

Check those cornflakes - I thought (though I could be confusing them with a different name) they had malt. (Barley malt, and almost all "malt" is barley malt, is a no-no.)

[celiac-mommy]

It's overwhelming at first, isn't it!!

We do gluten-free waffles, pancakes etc.. with fruit, scrambled eggs, veggie omlets, health valley rice or corn chex for breakfast, toast with PB&J (I make all baked goods with Pamela's gluten free baking mix--amazon .com)

Lunch is sandwiches (but good gluten-free bread gets pretty expensive), soups, salads, chips, veggies etc.. I often batch cook and put in small containers in freezer for quick lunches, "super" quesadillas with cheese, chicken, black beans, salsa, guac etc... on corn tortillas

Dinner is usually a meat-we do a lot of chicken and fish and try to get creative with different herbs and spices, always a veggie and/or salad and a starch-whipped sweet potato, Lundberg risotos and rice are good, homemade baked fries, homemade cornbread (the best recipe I've tried is to use Bob's Red Mill gluten-free cornbread and use vanilla soymilk in place of the liquid, drizzle with honey before baking--it is SOOOO good!)

snacks-ice cream with berries, LOVE LOVE LOVE Lara bars if you can get your hands on them--my picky 2 year old even loves them, seasonal fruits, gluten-free crackers, pretzles, Envirokids cereal bars (chocolate are great), rice cakes with PB&honey, lots of nuts, homemade trailmix, the sky's the limit!

We stick to a lot of whole foods, lots of fiber.

Good luck!

-Rachelle

[kimc337]

Check those cornflakes - I thought (though I could be confusing them with a different name) they had malt. (Barley malt, and almost all "malt" is barley malt, is a no-no.)

Hi, don't know if I`m doing this right on the forum. but my 15 year old daughter was told by way of blood test from her dr that she had celiac and omg all her symptoms fit but she cant go to the pedi gi dr till aug now her pedi said she could go glutt free if I want, and the gi dr place said they cant say anything as she is not a patient yet. I dont know what to do as this seems so over whelming and am on such a small food budget being a single mom. I cant believe she was never diagnosed with this before now with all her stomach problems we thought she had a ulcer. she had such failure to thrive as a infant and only gained 1 pound her first three months and just had thick mucus projectile vomiting, and just always had a tummy ache and the drs couldnt find anything and pretty much made me belive it was in her head. and to boot i`ve been trying to eat heathier by getting whole wheat pasta and wheat bread i feel so awful. so now i`m afraid if i should change her whole diet or wait till i see the pedi gi.

thanks and sorry if i posted this wrong.

Kim

[Eriella]

Hi Kim,

I completely understand how overwhelming eating gluten free can be on a small budget. My advice is to ignore all of the gluten free specialty items (especially breads, mixes, pastas, pretzels...), and eat naturally. Everyone will feel better that way. Rice pasta (either in the asian food section or with the spaghetti) tastes better than regular pasta, and it is still reasonable. It normally isn't advertised as Gluten Free, but normally Thai Kitchen and Notta Pasta are.

What I normally eat is EnviroKids cereal in the morning (it is either in the Organics or regular section and it has a giant animal cartoon on the front, like a Gorilla for the Gorilla Munch flavor) with a banana or eggs with fried potatoes. For lunch I either eat leftovers, make up bunless sandwiches, or eat rice and beans (you have to make it from scratch-- 1 cup rice and 2 cups water in one pot and 1 can of pinto or kidney beans and 1 can of crushed tomatoes in the other. Simmer for 40 minutes, combine, cook for 10 more, cover with cheddar cheese). For a snack I will have string cheese, fruits and veggies, or ice cream. Then for dinner, I grill, make pasta, or make up variation of meat and potatoes. It really isn't hard or expensive, as long as you read the labels, cook from scratch (it doesn't take that long and you can freeze leftovers for the future, and focus on what you can have, and not how great the brownie sundae/pizza/fried chicken looks.

I hope your daughter feels better soon!

[DebNC84]

Hi Kim,

and focus on what you can have, and not how great the brownie sundae/pizza/fried chicken looks.

That's what I'm screaming these days. There is really alot more to life than indulging on gluten products. It's not all that good for you anyway!

[Boffin]

Thank you for the replies and suggestions everyone. Even more than that, thank you for your support! I posted a very similar message on the UK Coeliacs board and mostly just got replies from people telling me that I should do the biopsy and that I shouldn't "self-diagnose" (despite the positive EmA result!) and how I couldn't expect any support if I didn't go through the proper procedures to get diagnosed officially! Anyway, I really appreciate your help here.

I have checked the cornflakes and here the Whole Earth brand of cornflakes are gluten-free, but perhaps it's different in the US. (For example, here in England, Kettle Chips are labelled as gluten-free and suitable for coeliacs, but apparently that's not the case over there! Let's hope that they change the recipe so that they're all gluten-free rather than the other way round!!)

Anyway, I'm learning a lot from this board and picking up lots of helpful suggestions.

At the moment I'm still somewhat alternating between being hopeful and being rather scared! The doom-mongers on the UK board are not really helping with their "if you don't get properly diagnosed other nasties could be missed" messages. I seem to have found that quite a lot of people in the US have gone gluten-free without official diagnosis though. Is that correct?

[Karen B.]

---snip---

At the moment I'm still somewhat alternating between being hopeful and being rather scared! The doom-mongers on the UK board are not really helping with their "if you don't get properly diagnosed other nasties could be missed" messages. I seem to have found that quite a lot of people in the US have gone gluten-free without official diagnosis though. Is that correct?

That's correct but as I understand it, in the UK, the official diagnosis is key to issues in your health care system that would not be an issue in the US. Not being in the UK, I don't know the details but I seem to recall that the diagnosis gets you the benefits of gluten-free items and a gluten-free diet if you have to be hospitalized. I'm surprised that the blood test alone isn't accepted though. My Mom's doc diagnosed her with just the blood test but that may be because I had already done the biopsy. If you have the option, I would have the biopsy now because the longer you are gluten-free, the more you heal up. At that point, the biopsy may come back negative just you haven't been eating enough gluten at that time to produce the damage they need to test.

---

How long must gluten be taken for the serological tests to be meaningful?

A strict gluten-free diet for more than three months may result in inconclusive serological tests in patients, who have started a diet without any diagnostic test. In this case a gluten challenge should be introduced for a proper diagnosis.

https://www.celiac.com/st_prod.html?p_prodi...-25107423012.15

[Eriella]

While in the UK, and other countries with socialized health care, a firm diagnosis is a must, in the US it is so flexible because you get no benefits from insurance either way and you are not taking any drugs whatsoever. Going gluten free will not hurt anyone.

Most doctors will not diagnose you as a celiac without a positive blood test and/or biopsy. However, on Monday I had 2 doctors (primary care and GI) diagnose me as gluten intolerant after showing no antibodies in a blood test and a positive dietary change. My doctors told me that they could redo the blood test and run an endoscopy, but with 2 of us in college it would be ridiculous to waste my parents' money and take the (very small) risk of the procedure when the outcome would be the same either way: I can't eat gluten.

My advice is what everyone told me: do what it takes to make you better. If going off gluten makes you better, stay away from it!

Good luck!