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Need Reassurance

BamBam

By BamBam
in Coping with Celiac Disease

Recommended Posts

BamBam Community Regular
BamBam
Posted

I just need some reassurance that the anxieties related with wheat/gluten will go away in time. I've had a rough week and just need some good vibes!

Bambam

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angel-jd1 Community Regular
angel-jd1
Posted

Hang in there. Are you having anxiety just from not being sure of what to eat?? Do you have stress somewhere else in your life right now? I guess I am not sure what you mean by anxiety.....

My great grandma always says "this too shall pass". Keep your chin up.

-Jessica :rolleyes:

BamBam Community Regular
BamBam
Posted
  • Author

I should have been a little clearer - but I guess I am just having anxieties related to always having to check everything I eat and people not understanding and stuff like that. Thanks for asking.

Bambam

angel-jd1 Community Regular
angel-jd1
Posted

Well I can't say that you will ever have to stop reading labels. I also can't say that people will ALWAYS get it. But you will become more accustom to reading labels and more used to putting up with "stupid" people!! ha :lol:

Here soon you will learn to rattle off a speech to them so that they can become educated on Celiac. You won't even think twice when they don't get it. Just HELP them "get it". I find that easier than expecting them to do it on their own.

Label reading is tricky. I find it best to call the companies myself. That way I am for sure if a product is safe for me. Someone on the board may say that they called and it is safe. I will then go ahead and call on my own just to verify for my own info. I feel safer that way. (maybe obsessive, but hey it's my health ;) )

It gets easier with time.

-Jessica :rolleyes:

celiac3270 Collaborator
celiac3270
Posted
Hang in there. Are you having anxiety just from not being sure of what to eat?? Do you have stress somewhere else in your life right now? I guess I am not sure what you mean by anxiety.....

My great grandma always says "this too shall pass". Keep your chin up.

-Jessica :rolleyes:

My mom always says that to me, too! :lol: "This too shall pass."

ianm Apprentice
ianm
Posted

As far as dealing with idiots there just isn't much we can do. You can lead people to knowledge but you can't make them learn anything. :lol: You just have to hold your ground, it is YOUR body and it is YOUR responsibility to take care of it. If they don't like it then that is THEIR problem NOT YOUR problem.

How long have you been gluten-free? You didn't say in your posting.

In time learning what you can and cannot eat just becomes a habit. As your body heals you will feel better and you will readily embrace the gluten-free lifestyle. I have lost so much and basically wasted the first 36 years of my life because of this disease. To dwell on the past just isn't going to make this go away. My life is so much better now and there is so much to look forward to because I am finally healthy.

It does get better and remember we are only a few mouse clicks away.

Ianm

mela14 Enthusiast
mela14
Posted

We all need reassurance. That's one of the good things about this board. We've all gone through our own hell and we can all relate.

Hang in there. Things will get better. We just have to learn exactly what our bodies can tolerate. If people don't get it...it's their problem. I just got off the phone with my brother and he said "your number one priority is to yourself". He said to "do whatever you need to get better and don't worry about explaining to others". I guess that's it in a nutshell. It seems so simple when others put it into words...... and yet we get all bent out of shape if we have to explain ourselves to anyone!

Take care of yourself,

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judy05 Apprentice
judy05
Posted

I felt really good tonight, I walked into my favorite Denny's restaurant and I realized that most of the waitresses recognized me as having a gluten intolerance. They don't quite remember the term gluten or celiac but my server teased me and said "when you walk in the door we know that we have to clean the grill and get out the clean utensils." As she took my order she asked if I wanted toast and immediately slapped herself in the face and said she was sorry because she realized what she had done. This really made me feel much better because people are starting to get it, even if it is one small step at a time. My sister-in-law is starting to understand and even thinks that she wants to get tested because she has a lot of the symptoms and she read an article about osteoporosis and recommendations that people with this disease should be screened for celiac. My grown children are listening and asking questions because they know how sick I was and seemed to be impressed with the progress I have made. My son said he didn't realize that we could go in a restaurant and tell them how to prepare our food. Denny's have bent over backwards for me, they read labels and let me know

what ingredients they have. Please don't get discouraged, things will get better for us. Just think of yourself as a pioneer helping others to "map out a workable plan "

for others to follow. I figure that there is a reason why I have this and I try to focus on the positives!

ianm Apprentice
ianm
Posted

I have to travel a lot for work and every Denny's I have eaten at has made an effort to accomodate me. They at least allow me to substitute any bread with something else. Have never had a problem with anything I've eaten at Denny's.

Ianm

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
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      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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