Jump to content
  • 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

Feeling Lost - Can You Help?


lostinwa

Recommended Posts

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~!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      5

      Awaiting dermatitis herpetiformis confirmation following biopsy

    2. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

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

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

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

    4. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

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

    5. - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,257
    • Most Online (within 30 mins)
      7,748

    KariNoMoreGluten
    Newest Member
    KariNoMoreGluten
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • suek54
      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      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
      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
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.