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Just Diagnosed...totally Gluten Free Since Friday....but...

Leapoffaith

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Leapoffaith Newbie
Leapoffaith
Posted

I have been totally gluten free since Friday.  Finally, I have experienced a small improvement.  I had more energy this morning (iron deficiency anemia).  So I ventured out of the house to eat a salad for lunch.  I talked to the manager, asked the manager to have the kitchen change gloves, not touch the salad with any bread products. 

 

Question:  So I'm not sick yet.  Am I right to think that a cross-contamination would send me to the bathroom immediately, or will I be up all night running to the bathroom?  Am I in the clear?  

 

Question:  I am stressed out about cross-contamination.  Can I assume that if I am not sick, then I was not cross-contamination?  Do you ever worry about cross-contamination WITHOUT symptoms?  

 

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GottaSki Mentor
GottaSki
Posted

I think it is reasonable to be worried - this is all new to you. It sounds like you did a great job and the salad was safe - for me the longer I was gluten-free the more sensitive I became to CC. This is common.

For now...continue doing what you are doing...you will settle a bit as time passes - be good to yourself :)

Lisa Mentor
Lisa
Posted

As a newly diagnosed, you might want to eat "in" as much as possible.  Try to stay away from processed foods and restaurants.  Restaurants are the most difficult, in my opinion, because you loose control. As careful as the staff appears to be, they can't compare to your own diligence.

 

After you are healed a bit, you body may be able to handle a slight bit of cross contamiation. Salads, although often the safe item to order, can be difficult to digest, gluten free or otherwise. <_<:)

 

Glad you are seeing a daily recovery.

Leapoffaith Newbie
Leapoffaith
Posted
  • Author

GottaSki and Lisa: 
Thank you for your kind reply



GottaSki:  That is exactly what I am worried about.  Can you do everything humanly possible to go gluten free and still have problems and damage?   I know everyone is different,
but is it rare to still cause damage or is it more common to see more damage?



Lisa:  Great advice about staying home, thank you.  I do have problems digesting dark green lettuce, but seem to be ok with the regular
lettuce (which seems to be less nutritious and filled with water).  Should celiac’s not eat lettuce?  I need to know if I should avoid it in the
future.  



Thank you! 

Lisa Mentor
Lisa
Posted

Lisa:  Great advice about staying home, thank you.  I do have problems digesting dark green lettuce, but seem to be ok with the regular

lettuce (which seems to be less nutritious and filled with water).  Should celiac’s not eat lettuce?  I need to know if I should avoid it in the

future.  

Thank you! 

 

You seem to be listening  to your body already. :)   That's a great advantage..  As a newly diagnosed, you may have already learned to shop on the outside of the store.  Whole foods, fish, meats, veggies, fruits, rice.  Most of each is easy to cook or prepare.

GottaSki Mentor
GottaSki
Posted

In my opinion it is rare to cause more damage, rather than the rule if you are being as gluten-free as possible - this can take time to learn all the hidden sources of gluten. Think of this - there are over 50,000 members on this forum - most of which have come here to learn and are now off living very full gluten-free lives. Are there others with serious problems for extended periods of time - yes - I happen to be one - but this does not make me think the majority has my problems.

We like to say we are 99% gluten-free in my family - living in a gluten filled world means teeny amounts of gluten can get into the most careful person - all we can do is try to remove all sources and hope for speedy healing.

Leapoffaith Newbie
Leapoffaith
Posted
  • Author

GottaSki:  I am so sorry to hear that you have had problems for so long, but I am grateful for your advice and knowledge through these challenges.

 

Question:  Will I know that I am doing good on my gluten free diet if my lab results improve, like my iron deficiency anemia?

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Takala Enthusiast
Takala
Posted

You will know by how you feel, since anxiety itself is one of the symptoms of celiac.  You should feel more confident about the entire gluten free "food situation" as time goes on.  Oh, and the lab results, that too.  :)

GottaSki Mentor
GottaSki
Posted

Yep, Takala answered it.

kittty Contributor
kittty
Posted

Question:  So I'm not sick yet.  Am I right to think that a cross-contamination would send me to the bathroom immediately, or will I be up all night running to the bathroom?  Am I in the clear?  

 

It totally depends on your own body and how it reacts. Sometimes I can tell within 20 minutes, other times not until many hours later. Sometimes the brainfog comes first, and sometimes the bathroom issues are first. I don't know why there's no pattern to it for me, and why other people experience glutening the same way pretty much every time.

cavernio Enthusiast
cavernio
Posted

It is possible to ingest gluten without any side effects. Each person is unique in what their symptoms are. I have yet to experience running to the bathroom as a symptom of gluten ingestion, diarrhea or vomitting or even really bad cramping or pain. Being gluten free for such a short period of time, you aren't likely to experience any sort of severe reaction from eating gluten, not unless you had severe reactions beforehand. Don't eat out.

Leapoffaith Newbie
Leapoffaith
Posted
  • Author

Thank you, everyone for your kind response.  I do appreciate all your help.

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Do talk to your doctor and dietician about checking for nutritional deficiencies.  Most blood tests for the eight B vitamins do not reflect how much is available or stored inside cells.  Blood tests reflect how much is circulating in the blood stream, the transportation system.  Blood levels can be "normal" while a deficiency exists inside cells where the vitamins are actually used.  The best way to see if you're low in B vitamins is to take a B Complex, and additional Thiamine and look for improvement.   Most vitamin supplements contain Thiamine Mononitrate, which is not easily absorbed nor utilized by the body.  Only thirty percent of thiamine mononitrate listed on the label is absorbed, less is actually utilized.  This is because thiamine mononitrate is shelf stable, it won't breakdown sitting on a shelf in the grocery store.  It's so hard to breakdown, our bodies don't absorb it and can't turn it into a form the body can use.  Take Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) which the body can utilize much better.  (Ask for an Erythrocyte Transketolace Activity test for Thiamine level.  Though not accurate, this test does better picking up on a thiamine deficiency than a blood test.) 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    • trents
      Outgrow celiac?

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      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked pointed out, absence of symptoms is not always a reliable indicator that no damage is being done to the body. I was one of those "silent" celiacs with no symptoms, or at least very minor symptoms, whose body was being slowly damaged for many years before the damage became pronounced enough to warrant investigation, leading to a diagnosis. By that time I had suffered significant bone demineralization and now I suffer with back and neck problems. Please, if you choose to continue consuming gluten, which I do not recommend, at least get tested regularly so that you won't get caught in the silent celiac trap down the road like I did. You really do not outgrow celiac disease. It is baked into the genes. Once the genes get triggered, as far as we know, they are turned on for good. Social rejection is something most celiacs struggle with. Being compliant with the gluten free diet places restrictions on what we can eat and where we can eat. Our friends usually try to work with us at first but then it gets to be a drag and we begin to get left out. We often lose some friends in the process but we also find out who really are our true friends. I think the hardest hits come at those times when friends spontaneously say, "Hey, let's go get some burgers and fries" and you know you can't safely do that. One way to cope in these situations is to have some ready made gluten-free meals packed in the fridge that you can take with you on the spot and still join them but eat safely. Most "real" friends will get used to this and so will you. Perhaps this little video will be helpful to you.  
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