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

I'm Back - Diagnosis Is Confirmed

jeslk

Recommended Posts

jeslk Apprentice
jeslk
Posted

Hi,

I posted here a few weeks ago after my doctor told me that blood tests revealed Celiac Disease. I didn't even know he was testing me (I haven't had any of the normal symptoms) so it came as quite a shock. The reason he did the test is that I have a complicated medical history: Non Hodgkin's Lymphoma (dx 2006), Thyroid Cancer (dx last month - total thyroidectomy done last Friday), virtually no Vitamin D, severe anemia . . . and I'm only 35. So my doctor (who is fabulous) went looking around and discovered the celiac. I went to the gastroenterologist and he said there was really no chance of it being a false positive (the levels were too high) but that a biopsy would be a good idea.

Anyway, the endoscopy was last week and I got the call yesterday that the biopsy "clearly confirmed" celiac. And so I am now gluten free. I've known this was coming, but I'm struggling. Part of it is because I've been symptom free - it's hard to appreciate the seriousness of this when I didn't even realize there was a problem.

Ultimately, though, it just seems so HARD. So I guess I'm looking for some short cuts - what are the "must read" posts here to help newbies get started. I'm sitting at home right now recovering from the thyroid surgery, and am feeling so hungry because I don't cook really well and can only think of popcorn!

Thanks for reading all of this - starting help would be MUCH appreciated!

Jess

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

Celiac.com Sponsor (A8-M):


JonnyD Rookie
JonnyD
Posted

I'm curious what your blood numbers were. I was just positive myself and turn 37 shortly. Mine seemed high but I don't have any reference to someone else with celiac. I'm trying to determine if a biopsy is even worth the time and money.

Good luck as I just went gluten-free last week!

Hi,

I posted here a few weeks ago after my doctor told me that blood tests revealed Celiac Disease. I didn't even know he was testing me (I haven't had any of the normal symptoms) so it came as quite a shock. The reason he did the test is that I have a complicated medical history: Non Hodgkin's Lymphoma (dx 2006), Thyroid Cancer (dx last month - total thyroidectomy done last Friday), virtually no Vitamin D, severe anemia . . . and I'm only 35. So my doctor (who is fabulous) went looking around and discovered the celiac. I went to the gastroenterologist and he said there was really no chance of it being a false positive (the levels were too high) but that a biopsy would be a good idea.

Anyway, the endoscopy was last week and I got the call yesterday that the biopsy "clearly confirmed" celiac. And so I am now gluten free. I've known this was coming, but I'm struggling. Part of it is because I've been symptom free - it's hard to appreciate the seriousness of this when I didn't even realize there was a problem.

Ultimately, though, it just seems so HARD. So I guess I'm looking for some short cuts - what are the "must read" posts here to help newbies get started. I'm sitting at home right now recovering from the thyroid surgery, and am feeling so hungry because I don't cook really well and can only think of popcorn!

Thanks for reading all of this - starting help would be MUCH appreciated!

Jess

Takala Enthusiast
Takala
Posted

Well, popcorn's good. B)

Wow, what a week you have had !

Welcome to the world of compulsive label reading !

There are natural gluten free foods, like in the produce aisles, that are fairly straightforwardly, obviously gluten free. Those are your friends.

Fruits, vegetables, nuts, herbs, eggs (chickenfruit ;) ... )

... and the plain meat case. Chicken, fish, beef, pork, anything that has not had anything added to it.

Plain rice is good, and Lundberg makes gluten free rice cakes, too. Rice cakes are great bases for toppings.

Extra virgin olive oil and pure apple cider vinegar are your friends, too, as they are used in many recipes, as well as for making your own sauces/dressings.

Most plain canned vegetables are gluten free. Pumpkin puree is a vegetable, for example, that is great in soups and stews and chile as a thickener, and often overlooked. Besides that, pumpkin and coconut milk and eggs can be easily baked into a very tasty custard, either with sugar or sugar substitutes. Canned, drained, rinsed beans are another great vegetable that can be a good source of both fiber, protein, and starch. Some beans, with green salsa on a gluten-free corn tortilla with some cheese, is a very easy meal.

And then there are manufactured foods. You are looking for confirmation of its gluten free status. Some brands are good at calling out that, and will mark their regular packages gluten free. For example, Hormel makes gluten free pepperoni and gluten-free turkey pepperoni, and it says it right on the package. They also make Naturals gluten free lunchmeat. Buddig also has its lunch meat marked "gluten free." Best Foods marks its mayonnaise gluten free, but it has soy. I just found a jar of Spectrum brand Soy Free Gluten Free mayonnaise in the store, with canola oil, for those trying to avoid both.

Other brands are not so straightforward. But you are now gearing your shopping towards that gluten free label, especially for baked goods or items made with grain products, where the potential for gluten contamination is highest.

Say you want to find out if your brand of peanut butter is gluten free, you can search 'gluten free brandXXX peanut butter' and see what comes up. Some information on the web is dated, so you will need to check to see if the status is current.

You need a shopping list. I was looking at this store's website (they are moving into my area of CA later this year) and they had a gluten free list of everything in the store, which I bookmarked thinking that somebody could use it. Voila, as many of the items are name brand gluten free in other stores.

pdf of Fresh and Easy gluten free items

Open Original Shared Link

This is just one store. Many other grocery chains have the same sorts of lists, and you can find them by googling 'gluten free name of store,' like 'gluten free Trader Joes,' or 'gluten free Whole Foods,' or 'gluten free Raleys'

And they will have a pdf or printout. You can make a grocery list off of that, because these brands tend to be in more than one store.

You can also google 'gluten free name of your town health food store' and get the locations of any smaller health food stores in the area, which may also be great places to pick up gluten free items.

So if you are wanting to just have an easy breakfast of gluten free cereal and some sort of liquid on it for breakfast, you have a lot of options. For "milk" if you are not doing regular dairy, there are nut and rice and hemp milks, or you can thin out yogurt with some water.

For lunch, think meat/vegetable/fruit and maybe some rice or tortilla or corn in some variation, or some gluten free bread. There are also gluten free soups that come in aseptic boxes, like Imagine brand. (read the labels) And there is always that peanut butter.

For dinner, you can do that again, meat/vegetable/fruit/starch. Big baked potatoes with toppings are good. Chef's salads are good.

For spaghetti and macaroni, there are gluten free rice and corn pastas. There are also gluten-free pasta sauces, if you don't want to used canned tomato puree and make your own.

Skillet dinner. Fry meat in olive oil, add liquid and instant rice and can of vegetables, seasonings, cook until rice is done and heated thru. Very basic, easy. 4 servings. Leftovers for next night.

For pizza, you can use a pre baked corn or rice tortilla as a base, or a pre made gluten free pizza crust, purchased or homemade, and then top it with tomato paste, olive oil, spices and cheese and pepperoni, and you have pizza. (Yes, there are also vegan gluten free cheeses on the market for those avoiding all dairy.)

Bread. Many people like the Udi's. But if you think you're not a baker, you can always learn. You can make single or double serving quick breads, right in the microwave, in a bowl, which are fresh, fast, and easy. Crack the egg, beat with water and vinegar and oil, add the flour or nut meal and the leavening, two minutes later there's a bun. This is a great way to try out new mixtures without blowing up the effort on an entire loaf and an hour in the regular oven. The trick to gluten free baking is to always test the result before declaring it "done," because baking times ALWAYS vary. This means you poke the top to see if it springs back and is solid, then stick a knife in it to see if it comes back clean. Gluten free flours do not behave like regular flour, they bake at slower temperatures for longer times. The commercial standard is for rice/tapioca type blends, but if you don't care for that, you can make bread out of almost anything.

Hopefully this will have given you some ideas on how to get started !

p.s. you will need a new toaster, cutting board, and anything plastic that can hold gluten residue should be recycled or donated.

jeslk Apprentice
jeslk
Posted
  • Author

I'm curious what your blood numbers were. I was just positive myself and turn 37 shortly. Mine seemed high but I don't have any reference to someone else with celiac. I'm trying to determine if a biopsy is even worth the time and money.

Good luck as I just went gluten-free last week!

These were my numbers:

Deamidated Gliadin Abs, IgA . . . 15

Deamidated Gliadin Abs, IgG . . . 33 High

t-Transglutaminase (tTG) IgA . . . 16 High

t-Transglutaminase (tTG) IgA . . . 12 High

Endomysial Antibody IgA . . . Positive Abnormal

Immunoglobulin A, Qn, Serum . . . 216

DQ2 . . . Positive

DQ8 . . . Negative

Good luck to you too!

Tekala . . . THANK YOU so much for all of the info - definitely a lot of great tips to start. One wrinkle that I forgot to mention was that I try to eat a vegetarian/vegan diet as much as possible. And I'm realizing that may be harder than ever now!

Thanks again!

Jess

cyberprof Enthusiast
cyberprof
Posted

Hi,

I posted here a few weeks ago after my doctor told me that blood tests revealed Celiac Disease. I didn't even know he was testing me (I haven't had any of the normal symptoms) so it came as quite a shock. The reason he did the test is that I have a complicated medical history: Non Hodgkin's Lymphoma (dx 2006), Thyroid Cancer (dx last month - total thyroidectomy done last Friday), virtually no Vitamin D, severe anemia . . . and I'm only 35. So my doctor (who is fabulous) went looking around and discovered the celiac. I went to the gastroenterologist and he said there was really no chance of it being a false positive (the levels were too high) but that a biopsy would be a good idea.

Anyway, the endoscopy was last week and I got the call yesterday that the biopsy "clearly confirmed" celiac. And so I am now gluten free. I've known this was coming, but I'm struggling. Part of it is because I've been symptom free - it's hard to appreciate the seriousness of this when I didn't even realize there was a problem.

Ultimately, though, it just seems so HARD. So I guess I'm looking for some short cuts - what are the "must read" posts here to help newbies get started. I'm sitting at home right now recovering from the thyroid surgery, and am feeling so hungry because I don't cook really well and can only think of popcorn!

Thanks for reading all of this - starting help would be MUCH appreciated!

Jess

Jess, you state: "Part of it is because I've been symptom free - it's hard to appreciate the seriousness of this when I didn't even realize there was a problem." Low vit d, lymphoma and low vit D are all potential "symptoms" of untreated/undiagnosed celiac. You might be surprised at how much better you feel when you go gluten-free.

As far as short cuts, I suggest the primer on the Gluten Free Goddess's blog: Open Original Shared Link

Good luck and welcome!

jeslk Apprentice
jeslk
Posted
  • Author

Jess, you state: "Part of it is because I've been symptom free - it's hard to appreciate the seriousness of this when I didn't even realize there was a problem." Low vit d, lymphoma and low vit D are all potential "symptoms" of untreated/undiagnosed celiac. You might be surprised at how much better you feel when you go gluten-free.

As far as short cuts, I suggest the primer on the Gluten Free Goddess's blog: Open Original Shared Link

Good luck and welcome!

Thanks! I agree that I likely have different symptoms than most would associate with. Celiac. I tried the link but it didn't work - can you resend? Thanks!!!

mushroom Proficient
mushroom
Posted

Try this one: Open Original Shared Link

That's her main website. Take a wander around and you will rind lots of good stuff. :)

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.

Go to topic listing

  • 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. knitty kitty
      - knitty kitty replied to Jhona's topic in Introduce Yourself / Share Stuff
      32

      Does anyone here also have Afib

      @DebJ14, You said "husband has low platelets, bruises easily and gets bloody noses just from Fish Oil He suggested he take Black Cumin Seed Oil for inflammation. He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation." I don't think black seed oil is...
    2. knitty kitty
      - knitty kitty replied to lehum's topic in Super Sensitive People
      9

      4.5 years into diagnosis, eating gluten-free and still struggling: would love support, tips, & stories

      Healthy Omega Three fats. Olive oil or flaxseed oil, oily fish, fatty cuts of meat. Our bodies run much better on burning fats as fuel. Diets based on carbohydrates require an increased amount of thiamine to process the carbs into fuel for the body. Unfortunately, thiamine mononitrate is used to enrich rice. Thiamine mononitrate is relatively unusable...
    3. Scott Adams
      - Scott Adams replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is this celiac?

      The reaction one gets when they get glutened varies a lot from person to person. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):
    4. Theresa2407
      - Theresa2407 replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is this celiac?

      A gluten ingestion can last for many months. Many years ago there was a celiac conference in Fl. Everyone there got contaminated with some having difficulty 6 months to recover. It will hit your Lympatic system and spread through the body and effect your nevous system as well. Most times when I get glutened it is from a prescription med that wasn...
    5. Hmart
      - Hmart replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is this celiac?

      Thank you so much for the responses. Every piece of information helps. I only knowingly ate gluten once, that was four days ago. I had the reaction about 3-4 hours after consuming it. I’m concerned that after 4 days the symptoms aren’t abating and almost seem worse today than yesterday. I haven’t had either breath test. I did ask about additional testi...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,939
    • Most Online (within 30 mins)
      7,748
    Michelle C.
    Newest Member
    Michelle C.
    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

    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      @DebJ14, You said "husband has low platelets, bruises easily and gets bloody noses just from Fish Oil  He suggested he take Black Cumin Seed Oil for inflammation.  He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation."   I don't think black seed oil is lowering inflammation.  It's lowering blood glucose levels. Black cumin seed lowers blood glucose levels.  There's a connection between high blood glucose levels and Afib.    Has your husband been checked for diabetes?   Must Read: Associations of high-normal blood pressure and impaired fasting glucose with atrial fibrillation https://pubmed.ncbi.nlm.nih.gov/36750354/  
    • knitty kitty
      4.5 years into diagnosis, eating gluten-free and still struggling: would love support, tips, & stories

      By knitty kitty · Posted

      Healthy Omega Three fats.  Olive oil or flaxseed oil, oily fish, fatty cuts of meat.   Our bodies run much better on burning fats as fuel.  Diets based on carbohydrates require an increased amount of thiamine to process the carbs into fuel for the body.  Unfortunately, thiamine mononitrate is used to enrich rice.  Thiamine mononitrate is relatively unusable in the body.  So a high carb diet can further decrease thiamine stores in the body.  Insufficient thiamine in the body causes the body to burn body fat and muscle for fuel, so weight loss and muscle wasting occurs.  Those extra carbohydrates can lead to Candida (often confused with mold toxicity) and SIBO (Small Intestinal Bacterial Overgrowth).   Losing weight quickly is a symptom of thiamine insufficiency.  Muscle wasting is a symptom of thiamine insufficiency.  I lost sixty pounds in a month.   Having difficulty putting weight on and keeping it on is a symptom of thiamine insufficiency.   The AIP diet works because it eliminates all grains and grasses, rice, quinoa, all the carbs.  Without the carbs, the Candida and SIBO get starved and die off.  Easy way to change your microbiome is to change what you feed it.  With the rowdy neighbors gone, the intestine can heal and absorb more nutrients.   Supplementing with essential vitamins and minerals is beneficial.  Talk to your doctor and nutritionist.  Benfotiamine is a form of thiamine that promotes intestinal healing.  The eight B vitamins are water soluble, so if you don't need them, they can be gotten rid of easily.   Night shades are excluded on the AIP diet.  Potatoes, tomatoes, peppers and eggplant are not allowed on the AIP diet.  They contain alkaloids that promote "a leaky gut".  Benfotiamine can help here. Sweet potatoes are avoided because they contain thiaminases, chemicals that break thiamine so that the body cannot use it.   The AIP diet has helped me.
    • Scott Adams
      Is this celiac?

      By Scott Adams · Posted

      The reaction one gets when they get glutened varies a lot from person to person.  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Theresa2407
      Is this celiac?

      By Theresa2407 · Posted

      A gluten ingestion can last for many months.  Many years ago there was a celiac conference in Fl.  Everyone there got contaminated with some having difficulty 6 months to recover.  It will hit your Lympatic system and spread  through the body and effect your nevous system as well. Most times when I get glutened it is from a prescription med that wasn't checked close enough.  the Pharmacuticals change vendors all the time.
    • Hmart
      Is this celiac?

      By Hmart · Posted

      Thank you so much for the responses. Every piece of information helps.  I only knowingly ate gluten once, that was four days ago. I had the reaction about 3-4 hours after consuming it. I’m concerned that after 4 days the symptoms aren’t abating and almost seem worse today than yesterday.  I haven’t had either breath test. I did ask about additional testing but the PA recommended me to a celiac specialist. Unfortunately the first available is mid-December.  As far as diet, I am a pescatarian (have been for 25+ years) and I stopped eating dairy mid-last week as my stomach discomfort continued. Right now, I’m having trouble eating anything. Have mostly been focused on bananas, grapes, nut butters, DF yogurt, eggs, veggie broth.   I ordered some gluten-free meal replacements to help.  But I’ll get all the items (thank goodness for Instacart) and try the diet you recommended to get me past this period of feeling completely awful.  Yes, my doctor diagnosed celiac. I was concerned it wasn’t right based on the negative blood test and my continued symptoms.  Even if you are ‘glutened’ it shouldn’t last forever, right? Is four days too long?   
×
×
  • 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.