Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Celiac.com!
    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~!

Link to comment
Share on other sites

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

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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!

Link to comment
Share on other sites
Mari Explorer

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.

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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

Link to comment
Share on other sites

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
      121,072
    • Most Online (within 30 mins)
      7,748

    Jannette
    Newest Member
    Jannette
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Fluka66
      Thank you again for your reply and comments which I have read carefully as I appreciate any input at this stage. I'm tending to listen to what my body wants me to do, having been in agony for many years any respite has been welcome and avoiding all wheat and lactose has thankfully brought this.  When in pain before I was seen by a number of gynacologists as I had 22 fibroids and had an operation 13 years ago to shrink them . However the pain remained and intensified to the point over the years where I began passing out. I was in and out of a&e during covid when waiting rooms where empty. My present diet is the only thing that's given me any hope for the future. As I say I had never heard of celiac disease before starting so I guess had this not come up in a conversation I would just have carried on. It was the swollen lymph node that sent me to a boots pharmacist who immediately sent me to a&e where a Dr asked questions prescribed antibiotics and then back to my GP. I'm now waiting for my hospital appointment . Hope this answers your question. I found out more about the disease because I googled something I wouldn't normally do, it did shed light on the disease but I also read some things that this disease can do. On good days I actually hope I haven't got this but on further investigation my mother's side of the family all Celtic have had various problems 're stomach pain my poor grandmother cried in pain as did her sister whilst two of her brother's survived WW2 but died from ulcers put down to stress of fighting.  Wishing you well with your recovery.  Many thanks  
    • knitty kitty
      Welcome to the forum, @Nacina, What supplements is your son taking?
    • knitty kitty
      @BluegrassCeliac, I'm agreeing.  It's a good thing taking magnesium. And B vitamins. Magnesium and Thiamine work together.  If you supplement the B vitamins which include Thiamine, but don't have sufficient magnesium, Thiamine won't work well.  If you take Magnesium, but not Thiamine, magnesium won't work as well by itself. Hydrochlorothiazide HCTZ is a sulfonamide drug, a sulfa drug.  So are proton pump inhibitors PPIs, and SSRIs. High dose Thiamine is used to resolve cytokine storms.  High dose Thiamine was used in patients having cytokine storms in Covid infections.  Magnesium supplementation also improves cytokine storms, and was also used during Covid. How's your Vitamin D? References: Thiamine and magnesium deficiencies: keys to disease https://pubmed.ncbi.nlm.nih.gov/25542071/ Hiding in Plain Sight: Modern Thiamine Deficiency https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/ The Effect of a High-Dose Vitamin B Multivitamin Supplement on the Relationship between Brain Metabolism and Blood Biomarkers of Oxidative Stress: A Randomized Control Trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6316433/ High‐dose Vitamin B6 supplementation reduces anxiety and strengthens visual surround suppression https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9787829/ Repurposing Treatment of Wernicke-Korsakoff Syndrome for Th-17 Cell Immune Storm Syndrome and Neurological Symptoms in COVID-19: Thiamine Efficacy and Safety, In-Vitro Evidence and Pharmacokinetic Profile https://pubmed.ncbi.nlm.nih.gov/33737877/ Higher Intake of Dietary Magnesium Is Inversely Associated With COVID-19 Severity and Symptoms in Hospitalized Patients: A Cross-Sectional Study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9132593/ Magnesium and Vitamin D Deficiency as a Potential Cause of Immune Dysfunction, Cytokine Storm and Disseminated Intravascular Coagulation in covid-19 patients https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7861592/ Sulfonamide Hypersensitivity https://pubmed.ncbi.nlm.nih.gov/31495421/
    • BluegrassCeliac
      Hi,   Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B  
    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
×
×
  • Create New...