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Feeling Lost - Can You Help?


lostinwa

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lostinwa Newbie

For starters I will give you a background - I have much stomach pain etc - dr. says IBS - I don't really believe it's IBS and really don't want to go with that until all other options are exhausted. So far I have not been able to find a good doc. I believe I can get blood panel work done but they just keep telling me it may not be conclusive and might still have to do the diet.

So for starters - what would you do? I don't see that it can hurt to do the blood test. Then if it is negative I can still try elimination diet. I don't know though. I guess if I will be doing it either way it doesn't hurt to start.

So there in lies the real problem. I can't find a place to start! I find lots of symptoms and what to eat and not to eat... but I am looking for a resource that will tell me everything I need to get rid of and how to eat the first couple weeks. I need to know how "clean" my kitchen should be... I just feel lost! there's so much information! I just want something that tells me how to diagnose by elimination diet, what I eat for how long, symptoms to watch for etc...

Please help point me to the best resource for a timeline of preparation how to and then diet execution.

Thank you in advance!!!! I am feeling so lost and overwhelmed~!


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nasalady Contributor

So for starters - what would you do? I don't see that it can hurt to do the blood test. Then if it is negative I can still try elimination diet. I don't know though. I guess if I will be doing it either way it doesn't hurt to start.

I think that you already have a good idea there....get the blood test done but be prepared for a possible false negative.

So there in lies the real problem. I can't find a place to start! I find lots of symptoms and what to eat and not to eat... but I am looking for a resource that will tell me everything I need to get rid of and how to eat the first couple weeks. I need to know how "clean" my kitchen should be... I just feel lost! there's so much information! I just want something that tells me how to diagnose by elimination diet, what I eat for how long, symptoms to watch for etc...

One of the best resources for how clean your kitchen should be and simple things to eat for the first couple of weeks that I know of is the following post on Karina's blog:

Open Original Shared Link

Take it easy....identify things that you eat right now that are gluten free! Do you eat steak? eggs? vegetables? potatoes? rice? All of those things are naturally gluten free. Raw, unprocessed foods are best because when seasonings are added you can get hidden gluten in there. But Karina says it best...please read the post on her blog and I think that will give you good info to start with.

If I were you, after the blood testing is done, I would go gluten free for about 3-4 weeks then try eating gluten and see how you feel. If you feel better without gluten and worse when you eat gluten then that's really all you need to know, IMHO!

Good luck with everything!!

JoAnn

ravenwoodglass Mentor

You have a good doctor that at least knows the blood work and be inconclusive. But do go ahead and get the tests done and then start the diet and see how it goes.

I haven't looked throughly at the link above but it looks like it may be a good one.

You do need to degluten your enviroment, get a new dedicated toaster, wooden utensils should be replaced and cutting boards. Drop any toiletries that have gluten ingredients and don't bake with gluten flours for others. There is more so do read as much as you can here and ask any questions you need to.

sb2178 Enthusiast

But for a diet trial, I would just live without toast. A new cutting board is helpful. Otherwise, you can stir with metal cutlery and hopefully you have some stainless steel pans that you can scrub down well to use for the diet. Non-stick pans are a bad idea. Foil can be put over baking pans.

Just put what you can't use in one cabinet (or what you can use!). After you see how the diet works, you can replace what you need or not.

I definitely second sticking to very simple one ingredient foods like steamed carrots or rice. It's easier and safer that using processed foods. I just did an elimination diet, and found it very helpful psychologically. Nothing like eating something and being very sure that it made you very sick to make avoidance easier!

Mari Enthusiast

You didn't say if you were gluten free but if you aren't you can have the blood test done. Somebody wrote that a person only need a small amount of gluten to keep the antibody levels up - maybe it was one peice of wheat toast daily. I've seen links to several simple elimination diets in another post so maybe you can find them by searching the internet. The Specific Carbohydrate Diet starts with food which are not very allergenic and works well for most Celiacs and people with IBS. People vary greatly in their reaction to gluten and you don't know yet how sensitive you are. So keep working to eliminate gluten from your foods then you may want to tackle the business of changing your cookware and other kitchen tools and begin getting gluten-free body products. Look at the Enterolab.com site as they have some more sensitive tests for antibodies and do the genetic tests also. Their FAQ sheet may give you some information on what you can do. If you haven't looked at the articles on this forum - especially the one of diagnosis see what they advise. You'll work this out and feel less overwhelmed as you go along. Don't forget to fill out your personal page and give us some information about your background regarding gluten and your possible problems - it will help us answer your posts.

GFinDC Veteran

If you want to pursue testing you need to stay on gluten until the blood is drawn. Don't start the gluten-free now as it can throw the test results off if you do.

When you get to doing the diet, stick with all home cooked meals with whole foods ingredients. No spice mixes but single ingredients spices are ok. No sauces or marinades etc. All your food should be in it's natural state, not packaged, boxed, canned etc. Frozen single ingredient veggies are ok, except soy.

This strictly whole foods diet will eliminate preservatives, soy, gluten, food colorings, secret mind control additives (kidding), and reading labels all day in the grocery.

A good starting diet would be rice or quinoa, chicken, sweet potatoes, salt, pepper, water, hamburger, olive oil, lettuce, psyilium husks, and parsley. Do this diet for a week or 2, and then add one new food item every 3 days.

If you get sick when you add a food, take it back out and stay on you safe foods for 2 or 3 days before you start adding again.

LDJofDenver Apprentice

For starters I will give you a background - I have much stomach pain etc - dr. says IBS - I don't really believe it's IBS and really don't want to go with that until all other options are exhausted. So far I have not been able to find a good doc. I believe I can get blood panel work done but they just keep telling me it may not be conclusive and might still have to do the diet.

So for starters - what would you do? I don't see that it can hurt to do the blood test. Then if it is negative I can still try elimination diet. I don't know though. I guess if I will be doing it either way it doesn't hurt to start.

So there in lies the real problem. I can't find a place to start! I find lots of symptoms and what to eat and not to eat... but I am looking for a resource that will tell me everything I need to get rid of and how to eat the first couple weeks. I need to know how "clean" my kitchen should be... I just feel lost! there's so much information! I just want something that tells me how to diagnose by elimination diet, what I eat for how long, symptoms to watch for etc...

Please help point me to the best resource for a timeline of preparation how to and then diet execution.

Thank you in advance!!!! I am feeling so lost and overwhelmed~!

Don't know if you're from Washington state or DC - here are links to celiac groups in both.

Hopefully you'll find some good information and resources to help you:

Open Original Shared Link

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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