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Hooray! Hooray! I Can't Believe It!


nu-to-no-glu

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nu-to-no-glu Apprentice

First, I want to thank everyone on this site for giving me insight to help me get the help and info I have been searching for 28 years for. I finally found a dr that completely agrees with my suspisions of celiac and actually looked at my bloodwork to help gain insight (low B12, high thyroid, etc.) And knows enough about celiac to actually pull all the mysterious symptoms together! I left my appt feeling disbelief, as I usually leave drs appts in sadness, but this time I felt relief! I'm not crazy! I even found out I'm intolerant to yeast and tuna.

I'm going back next week to check for dairy, soy, etc intolerances, but I started my gluten free diet today (I could care less about an endoscopy at this point) and to get all vitamin levels checked and cannot wait to feel better. I just had to share my joy after searching for so long, you all are the only ones who could truly understand how awesome it feels to have a dr actually help you! I hope that everyone searching gets to feel this, as it's been 28 very looong unhealthy years!


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nasalady Contributor
First, I want to thank everyone on this site for giving me insight to help me get the help and info I have been searching for 28 years for. I finally found a dr that completely agrees with my suspisions of celiac and actually looked at my bloodwork to help gain insight (low B12, high thyroid, etc.) And knows enough about celiac to actually pull all the mysterious symptoms together! I left my appt feeling disbelief, as I usually leave drs appts in sadness, but this time I felt relief! I'm not crazy! I even found out I'm intolerant to yeast and tuna.

I'm going back next week to check for dairy, soy, etc intolerances, but I started my gluten free diet today (I could care less about an endoscopy at this point) and to get all vitamin levels checked and cannot wait to feel better. I just had to share my joy after searching for so long, you all are the only ones who could truly understand how awesome it feels to have a dr actually help you! I hope that everyone searching gets to feel this, as it's been 28 very looong unhealthy years!

I understand your joy in finding a doc who understands and agrees with you.....congratulations!

Best wishes for a rapid recovery!

JoAnn

P.S. Here's a great link that explains the ins and outs of going gluten free:

Open Original Shared Link

nu-to-no-glu Apprentice

Thanks for the link. I realize now the even harder work begins! I just went to whole foods and wow, what a long hard trip (even harder with an impatient 20 month old) They peovided me with a 6 page list of every gluten free product in the store, and it was still overwhelming! I think I went down each aisle 3 times!

ravenwoodglass Mentor

It is great to finally know and to be able to start the healing. It can be overwhelming at first visit to the store but it will get easier. If you stick with mainly whole unprocessed foods at first it can help you both heal faster and will be less stressful in the store. Since WF gave you a list you may want to sit and formulate your shopping list at home and once you know where everything is it will take less time.

jkr Apprentice

I went to Whole Foods last night to pick up some gluten free items. I was in a hurry so I couldn't spend a lot of time. I didn't know that they have a gluten free list. The store is so big it can get overhwelming trying to find everything. I'll have to get that list next time I go.

LDJofDenver Apprentice

There are also lots of mainstream groceries that are gluten free, in your "normal" grocery store (King Soopers/Kroger; Safeway, etc.). And many of those stores also have safe lists.

Plus, there are gluten-free grocery shopping guides out there to make your life WAY easier at the store:

Here are links to two different ones:

Open Original Shared Link

Open Original Shared Link

There is another out that can also be downloaded to your PDA device, etc., by Clan Thompson.

I bought the Cecilas guide, it was about $25 and worth every dollar. Put an end to standing in the aisle and reading packages!

There are also restaurant guides out there, too.

nu-to-no-glu Apprentice

Thanks for the links and support LD and Raven. I'm already noticing 3 days after starting the diet that dairy is hitting me hard. Did you all eliminate it completely, or just cut back? I won't be surprised if the blood test comes back positive for dairy next week. I decided not to but any gluten free bread, yet (plus, the yeast intolerance) so I am sticking with veggies, fruits, and some meat. But no cheese??? argh!

Jdk-my husband works for whole foods, so he tipped me in on the list. They will print it for you at the front customer service desk. It was very helpful.


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ravenwoodglass Mentor
Thanks for the links and support LD and Raven. I'm already noticing 3 days after starting the diet that dairy is hitting me hard. Did you all eliminate it completely, or just cut back? I won't be surprised if the blood test comes back positive for dairy next week. I decided not to but any gluten free bread, yet (plus, the yeast intolerance) so I am sticking with veggies, fruits, and some meat. But no cheese??? argh!

Jdk-my husband works for whole foods, so he tipped me in on the list. They will print it for you at the front customer service desk. It was very helpful.

I eliminated it completely except for a tiny bit in my morning coffee and butter (I used Ghee at first which is lactose and casein free). After about 3 or so months I added back in cheddar cheese in small amounts and yogurt and a couple months later I added back mozzerela and tried a small amount of ice cream. Yogurt and hard cheeses like cheddar are pretty much lactose free so those can usually be tolerated before the soft cheeses, ice cream or drinking milk. Because I showed a reaction to casien in testing , a small one but still a reaction I don't do very much dairy other than on rare occasions but seem okay with small amounts. My reaction to soy is much worse, I am almost as sensitive to that as gluten so that puts out most dairy subs.

The Fluffy Assassin Enthusiast
Thanks for the links and support LD and Raven. I'm already noticing 3 days after starting the diet that dairy is hitting me hard. Did you all eliminate it completely, or just cut back? I won't be surprised if the blood test comes back positive for dairy next week. I decided not to but any gluten free bread, yet (plus, the yeast intolerance) so I am sticking with veggies, fruits, and some meat. But no cheese??? argh!

Jdk-my husband works for whole foods, so he tipped me in on the list. They will print it for you at the front customer service desk. It was very helpful.

I eliminated dairy completely. Going gluten-free was a cakewalk--OK, a breeze by comparison. If you can have soy (whee, I eliminated that, too), Vegan Gourmet's mozzarella substitute is really very good slipped into lasagna. Not anything like mozzarella but vaguely like a mix of lasagna and ricotta, as in what you would put in lasagna anyway.

But really, even with a husband working at Whole Foods, the substitutes will get really expensive really quickly. Best is to do what ravenwoodglass said: go simple. Meats, vegetables, fruits if you've resolved your fructose worries, rice and potatoes.

If you give up dairy, get a referral to a professional nutritionist or dietitian. I have no kids nor dependents and thus can blunder around making mistakes at every turn with the worst result being that I feel bad for a day or so and foolish for a minute or so. With a toddler, you don't really have that freedom. Getting all the vitamins and minerals you need is a trial, more than any of us (well more than I can) do for ourselves.

Also also, there's a gluten-free casein-free milk substitute powder called Vance's Dari-Free which seems to get uniformly positive reviews. Unfortunately, it isn't carried in many stores. You can order online but their site didn't work very well with Firefox. Maybe you'll have better luck.

Glad you got your diagnosis, and good luck with navigating the diet. Gluten-free is easy; dairy-free not so much.

Ahorsesoul Enthusiast
Thanks for the link. I realize now the even harder work begins! I just went to whole foods and wow, what a long hard trip (even harder with an impatient 20 month old) They peovided me with a 6 page list of every gluten free product in the store, and it was still overwhelming! I think I went down each aisle 3 times!

I shop at our local Fresh and Natural store. Mainly because the price label for all gluten free items has a red square on them. No guess work involved. I think this idea should be a law in all stores.

nu-to-no-glu Apprentice
I eliminated dairy completely. Going gluten-free was a cakewalk--OK, a breeze by comparison. If you can have soy (whee, I eliminated that, too), Vegan Gourmet's mozzarella substitute is really very good slipped into lasagna. Not anything like mozzarella but vaguely like a mix of lasagna and ricotta, as in what you would put in lasagna anyway.

But really, even with a husband working at Whole Foods, the substitutes will get really expensive really quickly. Best is to do what ravenwoodglass said: go simple. Meats, vegetables, fruits if you've resolved your fructose worries, rice and potatoes.

If you give up dairy, get a referral to a professional nutritionist or dietitian. I have no kids nor dependents and thus can blunder around making mistakes at every turn with the worst result being that I feel bad for a day or so and foolish for a minute or so. With a toddler, you don't really have that freedom. Getting all the vitamins and minerals you need is a trial, more than any of us (well more than I can) do for ourselves.

Also also, there's a gluten-free casein-free milk substitute powder called Vance's Dari-Free which seems to get uniformly positive reviews. Unfortunately, it isn't carried in many stores. You can order online but their site didn't work very well with Firefox. Maybe you'll have better luck.

Glad you got your diagnosis, and good luck with navigating the diet. Gluten-free is easy; dairy-free not so much.

Yeah, I think the fructose thing was just a dr making an assumption without proper testing. I'm going to keep an eye on things. It's nice to strip down the diet and eat so simply. It really opens your eyes to what can and can't be tolerated. And it seems to have been very instant for me. I agree, dairy is gonna be a struggle. My props to all of you who have mastered it!!!!

ang1e0251 Contributor

For dairy, I was already intolerant many years so I didn't change anything there. Fresh milk products no, aged products yes. If I would have felt bad, eating cheeses I would have stopped but I would have cried a lot!

happygirl Collaborator

Some of this may help as you get started - Unsafe ingredients: https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html

Safe ingredients: https://www.celiac.com/articles/181/1/Safe-...ents/Page1.html

A list of companies that has a clear gluten policy. If you don't see "wheat, rye, barley, barley malt, oats" on the labels, its not there, or hidden in "flavors, starches, etc." Open Original Shared Link and Open Original Shared Link This makes shopping MUCH easier.

FDA foods are required to list wheat - it cannot be hidden.

Rule #1: Never eat anything without reading the label first.

Rule #2: Consistently check labels, even of your favorite products, as product formulations can change.

Rule #3: If you are unsure of an ingredient, or the company's policy on labeling, call the phone number on the back of the product or email the company.

Great info to get you started: Open Original Shared Link

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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