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

Newly Diagnosed


JenD.

Recommended Posts

JenD. Newbie

Hi there -

I was just recently diagnosed with celiac disease and am not really sure where to begin. I pretty much suspected this all along, but now that it's a reality, all the things that I need to do are overwhelming me. I am so glad to have found this board - and I've already found some very good information just skimming through. I also got a book by Danna Korn, called wheat free, worry free which seems to be very good. I was just wondering - should I eat all natural foods for a while to let my body heal and then get more adventurous with finding gluten free items. I've read, for example, that some people have problems with vinegar and others do not. I'm worried that if I eat questionable items before my body has healed, that I won't be able to tell if something like vinegar bothers me or not. Should i just stick to plain meats, fruits, veggies, nuts, etc. for a few weeks or is this overkill?? Your help would be so much appreciated. Also is there a good way to call and ask manufacturers about their products (for when I start being more "adventurous") or do I just call and say "does this ingredient/product have gluten?" Oh and does anyone know of a good support group in the Peoria, IL area. OK that's it for now.

Thank you so much and so glad to be a part of this forum now!!

Sincerely

Jen


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



Celiac.com Sponsor (A8-M):



Carriefaith Enthusiast

Welcome

Staches and sugars (including lactose) may be hard to digest for the first few months. Eating gluten results in the destruction of villi in the small intesine. These villi contain enzymes which digest starches and sugars; therefore, if they aren't present, then they go through the digestive tract undigested (I believe this is explained better in the book you have). When the villi heal, these foods can be digested again.

Lactose intolerance is common for the first few months until the villi heal. Foods high in starch may also cause problems for a while (potatoes, corn, some gluten-free products such as pasta and bread).

flagbabyds Collaborator

Welcome!

first I have to say that my dad grew up in Peoria but we don't live there anymore.

I would say go lactose free for a while cause that is what most people do.

For calling manufacturers just call and ask if the product has gluten and have the product with you so you have the bar code and such.

CMCM Rising Star

Carrie....wow, I knew about lactose and the villi, but somehow I'd never read about starches and sugars in general also being a problem due to villi damage. I'd looked at everything to explain my digestive woes...and had always figured it must be starches and sugars and dairy that gave me the very obvious problems. This would explain a LOT! I can never eat corn or potatoes, and certain dairy foods give me more problems than others (but I feel best with NO dairy). Maybe I have more villi damage than I realized! When I got the Enterolab tests they were all strong positive except for the malabsorption test, which was quite normal and a low number (64, I think, where less than 300 is considered normal). SO.....I figured nothing too bad was going on in terms of intestinal damage, but maybe I'm wrong in assuming that....

tiredofdoctors Enthusiast

Hi Carrie -- Welcome to the board! You're already on the right track joining here. You will find some of the most knowledgeable, compassionate people here -- more than you can imagine. My dietician recommended that I get the GIG lists for gluten-free products. They're updated each year, and this year they have a separate one for medications. The total cost for both is $67.00, and is well worth it. You can get them on their website. Also, calling the companies is sometimes VERY frustrating . . . they will say "we don't add gluten to our products..." but when you continue and ask if they querie their suppliers with regard to THEIR gluten-free status, they say, "all I can tell you is that we don't add gluten to any of our products." Hmmmm......... I finally gave up my quest and stopped calling! I had been on a mission to call the companies and insist on answers, but got tired of them tap dancing around the issue!

I would recommend that you look at the products and foods categories here, kind of "scroll back" looking for things in particular that you're interested in -- you may find some good information there, but also grab that GIG info!

Don't want to say, "So happy that you're Celiac" :rolleyes: , but do want you to know that you're so welcome here. Take care,

Lynne

GlutenWrangler Contributor

I think it's a great idea to just eat fresh foods for a while. Fresh foods are the most nutritious for the body, and your body needs all it can get while healing. You may find that you cannot tolerate certain foods, especially dairy, but as your villi grow back, you should be able to re-introduce them. Keep in mind that celiacs also have other food sensitivities, including casein (milk protein), soy, eggs, yeast, and corn. It's not a bad idea to have yourself tested for other food allergies. Eating fresh foods eliminates the need to call the manufacturers. If you do need to know whether a certain product contains glute, there are plenty of lists available. There are some limited lists on ClanThompson.com. Also, if you take medications, make sure to check if they contain gluten. I found this list online for drugs: glutenfreedrugs.com. If you have any other questions, don't hesitate to ask. Good luck.

-Brian

JenD. Newbie

Thanks everyone for your responses -

It feels so good to have other people out there who understand and know what they are doing. I really appreciate all the help I can get! Thanks again!

Jen


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



Celiac.com Sponsor (A8-M):



happygirl Collaborator

Jen,

Welcome to the board ---- we are happy you have found us.

Everyone takes different approaches...some go "simple/natural," some just start substituting foods, and some go somewhere in between. The best approach is what will work best for you. I was pretty much in the "middle"

My favorite pasta is Tinkyada brand rice pasta....it is delicious!

(Side note: In regards to vinegar: the vast majority of people with only gluten related problems do ok with vinegar. The American Dietetic Association has stated that distilled vinegars ARE gluten free. https://www.celiac.com/st_prod.html?p_prodi...53107595400.d2)

Let us know what we can do to help!

Laura

Carriefaith Enthusiast
I can never eat corn or potatoes, and certain dairy foods give me more problems than others (but I feel best with NO dairy).
In the book I read (I think it's the Danna Korn one), I learned that the enzymes that break down the starches are near the bottom/middle?(don't remember) of the villi and the enzymes that break down lactose are near the tips of the villi. The tips would heal last, so that explains why so many people with celiac disease have lactose intolerance for a while!

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. - Wheatwacked replied to Midwesteaglesfan's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Going for upper endoscopy today

    2. - Midwesteaglesfan posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Going for upper endoscopy today

    3. - marlene333 replied to Grace Good's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Bee balm lipbalm not gluten free

    4. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,267
    • Most Online (within 30 mins)
      7,748

    Kristine Ryder
    Newest Member
    Kristine Ryder
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      Hello @Midwesteaglesfan and welcome. A result greater than 10 U/mL is considered positive. Some labs use 15 as the cutoff, but 34 is in the positive.  The endoscopy and biopsy is looking for damage to your small intestine.  I don't don't think 5 days is enough to repair the damage. This comment is effectly your answer, regardless of your biopsy results.  The endoscopy has been the Gold Standard diagnostic, and most healthcare providers won't diagnose celiac disease until your intestinal lining Marsh Score reaches stage 3. You don't really want to wait for the damage to get worse, especially since only five days mostly gluten free gave you relief.  Yes, migranes is one of the 200 symptoms that may be caused by Celiac Disease. Malabsorption Syndrome is often comorbid with celiac disease.  The western diet is deficient in many vitamins and minerals.  That's why gluten processed foods are fortified.  Gluten free processed foods are not; Vitamin D deficiency is a virtual given.  40 to 60% of the industrial population is deficient in vitamin D, Damage to the intestinal lining from celiac disease can decrease the number of vitamin D receptors.  So now you get no vitamin D from the sun (skin cancer scare) the major source of vitamin D, plus absorbtion from food is poor because of intestinal damage.   Low iodine intake is getting more of a concern because the major source of iodine used to be bread (dough conditioner with iodine was stopped in the US in the 1970s), dairy (lactose intolerance from eating quick pickles with vinegar instead of fermented pickles which supply lactase excreting lactobacillus to improve Lactose intolerance. Commercial Dairies have wheat, barley and rye added to the cow feed. Some say they are sensitive to milk protein, but it is the gluten added to supplement the cow feed to increase milk production that becomes part of the milk protein causing the problem.  And people use less iodized salt.  In the US intake of iodine dropped 50% from 1970 to 1984. Switch to Grass fed only milk and consider supplementing Liquid Iodine drops to your diet.  The omega 6 to omega 3 ratio of commercial milk is 5:1; Organic milk is 3:1 and grass fed milk is 1:1. The typical western diet is around 14:1, optimum for humans is 1:1.  Wheat flour is 22:1 omega 6:3.  Choose vegetables lower in omega 6, it is inflammatory. Eat fermented foods and switch to Grass fed only milk.  Some say they are sensitive to milk protein, but it is the gluten added to supplement the cow feed to increase milk production that becomes part of the milk protein.   
    • Midwesteaglesfan
      At 41 years old I have been fighting fatigue and joint pain for a couple months.  My family doctor kept saying nothing was wrong but I was insistent that I just didn’t feel right.  Finally after running several blood labs, one came back showing inflammation in my body and I was referred to a rheumatologist.  He was extremely thorough and sat with me and my family for a good hour asking questions and listening. He ordered X-rays of all my joints and more bloodwork.  He suspected some sort of reactive inflammatory arthritis.  My TTG (Tissue Transglutaminase) came back at 34. he told me to try going gluten free and out me on Salfasalzin to help the join inflammation.  Over the next couple days going gluten free and doing a lot of research and talking to people with celiacs,  we found that I should have an upper endoscopy for insurance purposes in the future.  I reached back out to my rheumatologist and expressed this concern and he got back to me stating I was correct and resume regular gluten diet and stop the medication until after that scope.     They were able to schedule me in for 2 days later.  I had been gluten free, or as close to it as I could be for about 5 days.  I know I ate some brats with it but wanted to use them up.  My symptoms had gotten slightly better in those 5 days.  I felt less fatigue and joint pain was slightly better(it had gotten really bad) so for these last 2 days I’ve gone crazy with wheat bread, pasta and such.  I’m hoping those 5 days didn’t screw this endoscopy up.  I can’t imagine after a life of gluten, my intestines healed in 5 days and after eating gluten again for these couple days,  my stomach hurts, joint pain is coming back up so I know the inflammation is there.   Hinesight after this diagnosis, I have had chronic migraines since my late teens.  Has that been a lingering symptom of celiacs all these years?  I’ve never really had the stomach issues, for me it came in heavy these last couple months as the fatigue, just always feeling tired and exhausted.  And the joint pain.     So getting in the car for the 2 hour drive to the hospital for this scope now.     Wish me luck!
    • marlene333
      To play it safe, use Vasoline Lip Therapy. No questions as to it containing gluten.
    • Mari
      jmartes, Thank you for sharing  more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some  medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is not a killer disease, it is a disabling disease as  you have found out. You have time to find some ways to help you recover. Stay on your gluten-free diet and be more careful in avoiding cross contamination . KnittyKitty  and others here can give you advice about avoiding some foods that can give you the gluten auto immune reaction and advice about vitamins and supplement that help celiacs. You may need to take higher doses of Vit. B12  and D3.  About 20 years before a Dr. suggested I might have Celiac disease I had health problems that all other Dr said they could not identify or treat. I was very opposed to alternative providers and treatments. So many people were getting help from a local healer I decided to try that out. It was a little helpful but then, because I had a good education in medical laboraties she gave me a book  to read and what did I think. With great skeptism I started reading and before I was half way through it I began using the methods outlined in the book. Using those herbs and supplements I went from hardly able to work to being able to work almost fulltime. I still use that program. But because I had undiagnosed celiac disease by 10 years later some  of my problems returned and I started to loose weight.    So how does a person find a program that will benefit them? Among the programs you can find online there are many that are snake oil scams and some that will be beneficial. by asking around, as I did. Is there an ND in your area? Do they reccomend that person? If you would like to read about the program I use go to www.drclark.net   
    • Scott Adams
      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
×
×
  • 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.