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

Needing Words Of Advice/encouragement

CajunChic

Recommended Posts

CajunChic Explorer
CajunChic
Posted

I've never been given a diagnosis of celiac. My Dxs are: Ibs-c, GERD, bile reflux, gallbladder disease (removed in 2009), endometriosis (lap in 2012), anxiety, IgA deficient, lactose sensitive. My hair is falling out, teeth are losing enamel in the front and are super sensitive. My blood work all came out negative, more were ordered after seeing IgA deficiency. My scope showed only increased intraepithelial lymphocytes. Dr says cant have celiac, just must be gluten sensitivity. Because of not having the dx, I tend to cheat on my gluten-free diet, especially since its king cake season in southern louisiana : ) After about a day or two, my muscles ache, headache starts, bloating, gas start for days. I know it's uncomfortable, but without knowing I'm damaging my gut, I don't have full willpower to not eat it! I do have a sister and aunt that are amazed at how awesome they feel after going gluten-free, but neither were tested for celiac. I just wonder if it will show up years later or am I struggling to accept I have only an intolerance. Thanks for reading my novel...

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

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted

It is very frustrating to be told you don't have Celiac Disease -- this happened to one of my teenaged sons right after I was diagnosed -- yet nearly all of his health issues were resolved eating gluten-free.  It took about a year and about three intentional slips for him to decide he coe uld never eat gluten...regardless of the label.  Have you had gene testing?  While having genes does not by itself indicate Celiac, it can be an important part of the puzzle -- it was for my children.

 

What you do have is numerous symptoms of Celiac Disease, increased lymphocytes (first stage of Celiac - but not specific to Celiac) and improvement to symptoms gluten-free.

 

It is very possible that you were in the early stages of Celiac when attempting diagnosis, but even Non-Celiac Gluten Sensitivity requires complete dedication to removing ALL gluten from your life.

 

This falls under advice rather than encouragement ... if you want your health to improve - stop eating gluten.

 

Hang in there :)

 

PS....just thought I'd add...you were diagnosed with NCGS...If your doctor said "just gluten sensitive" - you may want to find a Celiac specialist in your area to have them review your file....perhaps a well qualified second opinion will help.

nvsmom Community Regular
nvsmom
Posted

Ditto all that Lisa said. You haveNon-celiac gluten intolerance at the very least. That's basically the same as celiac disease but without the villi damage... but you have the beginning of villi damage so I would guess at celiac disease too.

 

You can be 100% gluten-free. You can do it. Yeah it sucks sometimes but you are really paying for those king cakes - a few minutes of pleasure and you are paying in obvious symptoms for days, and with less obvious internal damage or inflammation for weeks. I doubt they are worth it. What are king cakes, by the way? I'm in western Canada and haven't ever heard of that.  Could you make a gluten-free version of it?

 

I understand about missing foods. I was brought up with Ukrainian foods and thought I would never have another pierogy again. :( And I didn't for a good year and a half but then my mom, in a true labor of love, made some time consuming gluten-free pierogies for me. They were to die for. And no, they weren't quite the same as the wheat flour ones but they were a thousand times better than nothing.  Pirogies are like dumplings usually filled with potatoes and old cheddar and then slathered in butter and fried in onions. Mmmmmmmmm.

 

Skip eating out if it's too much for you. Meet up with everyone later for coffee or drinks. If you can't stand up to the temptation, then avoid situations where you will be tempted.

 

You need to keep yourself well. Food isn't worth poor health, bad quality of life or even dying young.

 

You can do it!

CajunChic Explorer
CajunChic
Posted
  • Author

Thank you Gottaski and Nvsmom for the kind words. I haven't had gene testing, I guess I'll see if my PCP will order it. My last gastro made it clear that he could "do nothing more for you other than refer you to the mayo clinic.." So, I'm not wanting to even show my face there again!

Nvsmom-a king cake is a glorious sweet, cinnamon cake baked in a ring stuffed with anything you'd like. My favorite is strawberry and cream cheese : ) then Mardi gras colored (green, yellow, and purple) sugar is poured on top. I did try one place with a gluten-free version and it was awful. I think that's what started my gluten overload : (

glutenfreeliac Collaborator
glutenfreeliac
Posted

Every time you're tempted to eat gluten, think about what you've written here. Celiac is just one thing on the gluten-free scale. Non-celiac gluten sensitivity is just as real as any other illness, and should be treated as if it were celiac. No gluten. No king cakes -- I get temptation, but when it (now rarely) hits me, I remember how sick I was. There is no food in the world worth going back to that. None.

 

Now, it's possible you may have other issues in addition to gluten, and that you should see another doctor, one who is willing to focus on your problems. Not every doctor is a right fit for a patient, and not every doctor has a full understanding of auto-immune diseases like celiac. 

cyclinglady Grand Master
cyclinglady
Posted

Thank you Gottaski and Nvsmom for the kind words. I haven't had gene testing, I guess I'll see if my PCP will order it. My last gastro made it clear that he could "do nothing more for you other than refer you to the mayo clinic.." So, I'm not wanting to even show my face there again!

Nvsmom-a king cake is a glorious sweet, cinnamon cake baked in a ring stuffed with anything you'd like. My favorite is strawberry and cream cheese : ) then Mardi gras colored (green, yellow, and purple) sugar is poured on top. I did try one place with a gluten-free version and it was awful. I think that's what started my gluten overload : (

Ah, King cake! I have not tried a GFversion yet, but it should not only be possible, but delicious. Start a separate thread and I bet someone has a good recipe or google it. There are several gluten-free recipes available. They all use for yeast and will take a little time, but perfect for a Sunday afternoon.
nvsmom Community Regular
nvsmom
Posted

Thank you Gottaski and Nvsmom for the kind words. I haven't had gene testing, I guess I'll see if my PCP will order it. My last gastro made it clear that he could "do nothing more for you other than refer you to the mayo clinic.." So, I'm not wanting to even show my face there again!

Nvsmom-a king cake is a glorious sweet, cinnamon cake baked in a ring stuffed with anything you'd like. My favorite is strawberry and cream cheese : ) then Mardi gras colored (green, yellow, and purple) sugar is poured on top. I did try one place with a gluten-free version and it was awful. I think that's what started my gluten overload : (

 

Oh... that does sound good! LOL  I had a hard time walking away from my Grandma's sweet dough cinnamon bun recipes. I can still imagine the flavour and texture. Mmmm. I made a point of not having any gluten-free cinnamon buns for a good 6 months after going gluten-free. It gave my taste buds some time to (sort of) forget how much I loved them. When I finally did make them in a gluten-free version, I was pretty pleased with the results.  You might have to give up King cakes from a while so when you finally try a gluten-free version, it's quite a treat even if it's not the same. KWIM?

 

And just to confuse you further,  ;)  there is a small minority of celiacs who tested negative for the "celiac genes" (DQ2 and DQ8) so getting a negative test isn't 100% that it isn't celiac - it's somewhere around 95%.

 

Which blood tests did you have? As one who is IgA deficient, you would want the tTG IgG, EMA IgG, DGP IgG, and maybe the old (and less reliable) AGA IgG. By the way, being IgA deficient also points to celiac disease, although it's not diagnostic. About 5%, or 1/20, celiacs are IgA deficient which is higher than the regular population.

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

Celiac.com Sponsor (A8-M):


CajunChic Explorer
CajunChic
Posted
  • Author

Cyclinglady-I'm definitely going find the gluten-free version and test out my baking skills! Are you from Louisiana, since you know the heavenly treat? Or do we not have the monopoly on King cakes here, lol

Nvsmom-I've had all of the tests you've mentioned except for the AGA IgG. Thanks for all of the information! I'll peruse the genetic tests, then give up and *try* to be content with my dx as is. I will take your advice and distance myself from my sweet demons for a while.

Glutenfreeliac- boy did I learn that not every dr is made for every patient! He was my 3rd gastro! I appreciate your advice and will work on my stubbornness towards NCGS. Though being called a celiac would help me stop glutening myself : /

cyclinglady Grand Master
cyclinglady
Posted

Like Nicole suggested, wait for six months before attempting to make or eat a King's Cake.  That way you'll "forget" what the wheat version tastes like.  It's bound to be good.  I just served homemade gluten-free chocolate mayonnaise cupcakes to three gluten eaters and they couldn't even tell the difference.  I was in a totally gluten-free restaurant this past fall and we ordered cupcakes for dessert.  Although it was fantastic to be eating in a totally gluten-free restaurant there is nothing like a cake or bread that has just come out of your own oven.  It is so very fresh especially if you use great ingredients!  

 

Alas, I am not from LA.  However, my dearest neighbors were from the New Orleans area -- Mandeville and Houma.  We got to visit their extended families, etc. often.   Now, they have left our state and are living near Lake Toledo Bend.   Anyway, each year, their family shipped them a King's cake via Fed Ex.  It's very similar (except for the colored frosting) to some Polish cakes made from yeast.  It's very good and it's fun to see who gets the "baby".  

 

I do want you to know that although I was formally diagnosed 3/2013, my husband has been gluten-free for 13 years.  He went gluten free at the advice of my allergist and his GP.  The first year was a huge learning curve, but at the end of the year, he knew for sure that gluten was making him sick.  He has never cheated since but has been accidentally glutened outside our house.  He refuses to get tested because he doesn't want to do the challenge.  So, it is possible to adhere to the diet without a formal diagnosis.

 

Take care.  You do not have to give up delicious goodies.  I always bake and freeze small portions to have on hand.  I am never without my gluten-free desserts!

  • 5 weeks later...
CajunChic Explorer
CajunChic
Posted
  • Author

Just wanting to celebrate!! My dr finally gave me a celiac diagnosis!! Not that I'm happy about it, I'm happy about being validated. 10 years and thousands of dollars later...I have celiac. My friends don't get the impact of that statement, but I knew y'all would : )

kareng Grand Master
kareng
Posted

Just wanting to celebrate!! My dr finally gave me a celiac diagnosis!! Not that I'm happy about it, I'm happy about being validated. 10 years and thousands of dollars later...I have celiac. My friends don't get the impact of that statement, but I knew y'all would : )

 

Congrats and welcome to the club!  Unfortunately, our secret de-coder rings and matching club ties are on back-order!  The good news is we don't  charge any dues.   :lol:

notme Experienced
notme
Posted

welcome to the best club you never wanted to join!!  LOLZ  :P   glad you got a firm diagnosis  :)

livinthelife Apprentice
livinthelife
Posted

welcome to the best club you never wanted to join!!  LOLZ  :P   glad you got a firm diagnosis  :)

FUNNY!!!! Throwing up the celiac gang sign!! Maybe also tossing up some toilet paper!!

 

Even though you didn't *want* to hear your DX, at least you know what to do now!! That's a great thing!!

cyclinglady Grand Master
cyclinglady
Posted

What a relief for you. Now you can move forward!

CajunChic Explorer
CajunChic
Posted
  • Author

Thanks for the humor and support!! My husband especially enjoyed the celiac gang signs, lol. So now he's calling me a gluten gangster....now on to the rest of life!!

cahill Collaborator
cahill
Posted

Thanks for the humor and support!! My husband especially enjoyed the celiac gang signs, lol. So now he's calling me a gluten gangster....now on to the rest of life!!

gluten gangster :lol: :lol:  lovin it :lol: :lol:

NoGlutenCooties Contributor
NoGlutenCooties
Posted

Thanks for the humor and support!! My husband especially enjoyed the celiac gang signs, lol. So now he's calling me a gluten gangster....now on to the rest of life!!

 

:lol:  love it!  Now go get 'em...  gangster style...

 

Open Original Shared Link

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. Scott Adams
      0

      Celiac Disease Beyond the Western World: Hidden Populations, Changing Diets, and Growing Awareness

    2. Wheatwacked
      - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium. A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake. With low D your body is not absorbing calcium from your food so it steals it from your bones. Heart has priority over bone. I've been taking 1...
    3. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ has very little gluten in it. Gluten is the carbohydrate storage protein, what the flour is made from, the fluffy part. Just like with beans, there's the baby plant that will germinate ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein. Wheat germ is the baby plant inside a kernel of wheat...
    4. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3. Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C. Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine. Weight...
    5. Florence Lillian
      - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free. I have a cupboard full of supplements that did not agree...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,356
    • Most Online (within 30 mins)
      7,748
    JAGAPG
    Newest Member
    JAGAPG
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Wheatwacked
      Supplements for those Diagnosed with Celiac Disease

      By Wheatwacked · Posted

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Florence Lillian · Posted

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my 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.