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.

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

    • Total Members
      133,050
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • tiffanygosci
      Hi Cristiana! It's so nice to meet you! Thank you for the kind reply I am glad I live in a time where you can connect with others through the Internet. That is a mercy I am grateful for.
    • knitty kitty
      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
×
×
  • 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.