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Honestly Glad To Finally Understand What's Up

jensey

By jensey
in Coping with Celiac Disease

Recommended Posts

jensey Apprentice
jensey
Posted

I have been diagnosed by my blood work, "D" (we'll say digestive issues if you don't get the D)for over a year and a half,general intolerance to many foods, and my Pops finally getting tested with positive results for both genes related to the disease.

Pops is a vegetarian who now is not only allergic to dairy but to soy as well. When I thought it through, before positive results from his GI specialist I considered that long term avoidance of being diagnosed and continuing on a limited diet as he and I like to do one could develop as he has allergies to that which sustained us for a long time. I AM GRATEFUL I know what the issue is, that is certain! I have ease and understanding knowing why everything I based my eating patterns on created discomfort. I am also grateful that I will have to live my life eating in a clean manner.

While the awareness makes me understand and settled, I still am so uncertain about so many aspects of the disease that it is unsettling. I have stated in other posts that I work in an essentially scratch bakery (scratch bakery for about 4 years), and have been in the industry for 21 years. I am excited to learn and teach others about the process of living gluten free.

I am however still unclear, as I think many are, about what repercussions may arise by working in a flour filled environment. Regarding that I still have what I perceive to be unrealistic hope that I will be able to manage a full service scratch bakery and maintain my digestive health. I am doing my part with regards to my diet and have been gluten free DIET WISE for over 12 days and have seen some relief but the "D" is still everyday. It is less severe than before, but none the less still present. WHA WHA WHA WOE IS ME is not exactly where I am but I FEEL it sometimes. I never SHOW that part to anyone. I am so strong willed that I have in my head that I will be the one that finds a way to work around flour and have a healthy digestive system, however every day that passes and every day that it remains "just not EXPLOSIVE" leads me to consider that while I have an issue that is completely treatable I may have one that inhibits my ability to do my job and live well.

FRIKKING ROLLER COASTER! I am smart, relatively young and positive enough to get through this but I am a head strong person who probably in denial about what must be the next step. I JUST bought a house. Well closing on it soon and I am the only income WHA WHA WHA...SOrry. I don't want a pity party. I think I just want someone to say FLAT OUT "YOUR JOB WILL NOT WORK GIVEN YOUR CONDITION IN THE LONG RUN". My doc says lets see what the blood results show in 3-6 months. My company is small and will be growing in the next 8-14 months so I kind of have to throw my hat in the ring soon or I don't know.

I think I am just doing a lot of venting, for that I apologize, but I have to get it out of my head. Thanks.

I really am GRATEFUL to be able to piece all the past digestive issues together and make sense of it all, it does ease the burden, REALLY! It's just new that's all. I will be fine...I know I will.

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Takala Enthusiast
Takala
Posted

I see a gluten free bakery in your future.

GlutenGuy36 Contributor
GlutenGuy36
Posted

Hello,

I can see that you are very determined. I guess it all boils down to how sensitive you are to gluten. Some are more sensitive than others. I would have to say that sooner or later the chances are from being around it at work for 8 to 10 hrs a day that you will eventually ingest some accidentally.

I use to Manage a Pizza place and I can remember when making the dough and adding the flour in to the mixer all the flour particulates floating in the air. If you inhale those or breathe through your mouth and they find their way to your digestive system you are asking for trouble.

I know you have your own bakery but what about changing it to a gluten free one? I'm sure you would have lots of loyal customers that would love to know they could come and get some "safe" bakery goods from someone who knows what they are doing. I know that is a big decision and I hope everything works for you.

-ted-

jensey Apprentice
jensey
Posted
  • Author

Ted,

Thanks for your input you are the first person who has some first hand knowledge about which I speak. I don't OWN my own bakery, but I run one for a GREAT company that I am grateful to work for. I have indeed, since being diagnosed, found myself in situations where I have had flour inadvertently fly in my face. In the healing stage I am being fairly cautious, but I wonder if my cautiousness is on the verge of paranoia. That being said I recognize that I have little reference to call upon regarding my situation. I don't mix doughs, and since having been diagnosed do my best to stay out of the dough prep area, but how effective can I be if I cannot even taste the product I put out for sale? How safe can I feel knowing that my clothes certainly have flour that will cross contaminate my own home?

I appreciate your input and thank you for your support.

Jen

Hello,

I can see that you are very determined. I guess it all boils down to how sensitive you are to gluten. Some are more sensitive than others. I would have to say that sooner or later the chances are from being around it at work for 8 to 10 hrs a day that you will eventually ingest some accidentally.

I use to Manage a Pizza place and I can remember when making the dough and adding the flour in to the mixer all the flour particulates floating in the air. If you inhale those or breathe through your mouth and they find their way to your digestive system you are asking for trouble.

I know you have your own bakery but what about changing it to a gluten free one? I'm sure you would have lots of loyal customers that would love to know they could come and get some "safe" bakery goods from someone who knows what they are doing. I know that is a big decision and I hope everything works for you.

-ted-

ang1e0251 Contributor
ang1e0251
Posted

I think you already know the answer to your question but it's hard to face that you may have to change the focus of your career. Can you specialize in another aspect of the company or change your baking to gluten-free in a company that specializes?

txplowgirl Enthusiast
txplowgirl
Posted

"the "D" is still everyday" You will have it every day until you remove yourself from that environment.

I think I just want someone to say FLAT OUT "YOUR JOB WILL NOT WORK GIVEN YOUR CONDITION IN THE LONG RUN". Yes sir, I do believe that and deep down you know it too. I hope you will not make yourself any more miserable than you are now. If you are willing to keep yourself in that environment you will eventually get worse. But remember that is just my opinion. I wish you well. Vicky

txplowgirl Enthusiast
txplowgirl
Posted

"the "D" is still everyday" You will have it every day until you remove yourself from that environment.

"I think I just want someone to say FLAT OUT "YOUR JOB WILL NOT WORK GIVEN YOUR CONDITION IN THE LONG RUN". Yes sir, I do believe that and deep down you know it too. I hope you will not make yourself any more miserable than you are now. If you are willing to keep yourself in that environment you will eventually get worse. But remember that is just my opinion. I wish you well. Vicky

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ranger Enthusiast
ranger
Posted

I worked as a chef for many years and thank God I retired before I got so sick. I don't know how people work with celiac. But now, I am considering part-time work but know that I could never work in a restaurant again, much less a bakery. If I were younger, I would consider opening a gluten free bakery (hint-hint).

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    • knitty kitty
      High DGP-A with normal IGA

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      @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.
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    • 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

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      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.
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      High DGP-A with normal IGA

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      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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