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Newly Diagnosed Help Please

Jarrett

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Jarrett Newbie
Jarrett
Posted

Hi all, first post, i have just been diagnosed with Celiac and to tell you the truth it feels good. Not good but just to finally know. Anyway...I have some questions I hope you could all help me with. I have learned so much from this website and do not know what i would do with out it. Okay, here they are.

1. I seem to react to soy, diary, peanuts, possibly citrus and walnuts. Was curious if anybody else had this problem, and if so, if anyone replies to this could they please list what else they react to so I could watch out for it.

2. Now that i am gluten free, when i do eat something bad i get like a quick jolt in my gut, like someone squeezed it real quick...pretty random but just wondering.

3. The jolt is followed by about 45 minutes of brain fog, like jekyl and hyde, it's like two different worlds.

4. I drank gin last weekend and got glutened...I thought it was allright but i guess not..any comments on that possibly.

Thank you all very much and i look forward to hearing and sharing experience with you all

Jarrett

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Green Fingered Gaelic Newbie
Green Fingered Gaelic
Posted

Hi Jarrett,

Welcome to club Coeliac.

I'm glad your having a soft landing.

I've been diagnosed for 24 years. I'm 26. My Gran recognised my condition early and saved me allot of suffering.

It is great to be diagnosed, now you can at least get on with getting better. However its a long road, experience is the teacher, and the better you get at it the harder it becomes.

As an adult I've become more sensitive, really extreme. The more I eliminate gluten from my diet the more sensitive I become, but at the same time the less likely I become to develop other allergies or life threatening illnesss. So far I'm a Coeliac, and thats it. I'm not allergic to anything else. Yet!

To answer your questions:

1) No I don't, but after being glutened I'm less inclined to eat dairy. Just for a little while, untill the stomache bacteria recover. Then I'm back to normal and can eat anything.

Soy sauce is usually fermented using wheat, so stay clear. Unless its tamari, however many of the tamari soy is fermented in the same casks as the wheat ones, so it gets cross contaminated. Cross contamination is a cruel one. If I eat out I expect it, and thats the price of eating out for me. Many Coeliacs/Celiacs stop eating any processed foods to seliminate cross contamination.

2) Yes, I've had similar experiences at times. Over my life the symptoms have changed many times. Apart from the obesity I've encoutered most of them. Right now I've got an aching intestine and occasional sharp shooting pains right through it; which cripple me for a split second.

3) At times, tho over the years I think I have developed pretty good mood control. Its something you need to master when you live with this. Its ironic when your own immune system trys to kill you. It screws with your head. If you expect it you can control it so that it don't ruin relationships. During a reaction your judgement is lapsed. I just try not to say anything. <Obvisously not the case in this post> . When I'm glutened I feel very angry, I try to let it flow through me rather than reflecting it onto the ones I love. Some times its the anger thats made me realise I've been glutened.

4) I love gin, I love whiskey, I love tequila and I ain't got no reactions. However I would get a reaction from a glass that had trace gluten on it. One what was washed up with glutened dishes. Sometimes I wonder about glasses in bars. Was thinking of having a special glass for me in my local, just cause I'm so sensitive now.

Finally this forum is the best thing since sliced bread B)

lorka150 Collaborator
lorka150
Posted
1. I seem to react to soy, diary, peanuts, possibly citrus and walnuts. Was curious if anybody else had this problem, and if so, if anyone replies to this could they please list what else they react to so I could watch out for it.

2. Now that i am gluten free, when i do eat something bad i get like a quick jolt in my gut, like someone squeezed it real quick...pretty random but just wondering.

3. The jolt is followed by about 45 minutes of brain fog, like jekyl and hyde, it's like two different worlds.

4. I drank gin last weekend and got glutened...I thought it was allright but i guess not..any comments on that possibly.

Hi Jarrett, welcome to our boards. To answer your questions.

1. At the beginning, I reacted to everything, but now our of the ones you listed, I cannot tolerate casein/dairy, in addition to allergies I already have to the onion family, buckwheat family, and rice family.

2 + 3. >>> Sounds like my casein intolerance (in addition to other symptoms I get).

I can't answer 4, I don't drink.

Good luck!

FaithInScienceToo Contributor
FaithInScienceToo
Posted
3) At times, tho over the years I think I have developed pretty good mood control. Its something you need to master when you live with this. Its ironic when your own immune system trys to kill you. It screws with your head. If you expect it you can control it so that it don't ruin relationships. During a reaction your judgement is lapsed. I just try not to say anything. <Obvisously not the case in this post> . When I'm glutened I feel very angry, I try to let it flow through me rather than reflecting it onto the ones I love. Some times its the anger thats made me realise I've been glutened.

GREAT reply! Especially that section.

Green Fingered Gaelic Newbie
Green Fingered Gaelic
Posted
GREAT reply! Especially that section.

Thanks buddy! :)

CarlaB Enthusiast
CarlaB
Posted

Jarrett, welcome to the board.

Gin should be fine to drink as it's distilled. However, some people are sensitive to grain alcohols even though they are supposed to be fine from a gluten standpoint. I'm can't really drink anything right now except for an ocassional glass of wine. I'm hoping that as I heal I will be better able to tolerate a cocktail once in a while.

Brain fog is the worst ... mine lasts 8 days.

You might be having problems with foods because you're intestines are in bad shape. As you heal, you might be able to add things back in. I happen to be casein senstive, so dairy will never be an option for me.

I also am allergic to mold, so have to watch for foods with a high mold content -- peanuts, fruit juice, dried fruit bars (Lara Bars, Clif Nectar Bars), etc. I'm very sensitive to mold, most people eat that stuff with no problem. When I'm healthy, I can rotate in foods I'm sensitive to, but never dairy or gluten.

jerseyangel Proficient
jerseyangel
Posted

Carla--What symptoms do you get from the molds?

Recently, I've cut out juices and dried fruits--but because if GI issues. I tried a Lara Bar yesterday, and got sick almost immediately after--

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CarlaB Enthusiast
CarlaB
Posted

It's funny, the molds is something I discovered about 12 years ago on a rotation diet I did back then to see why I was so sick (don't know why I didn't discover wheat was a problem back then!!). Molds make me very fatigued. I don't notice anything at first, it's just that if I have a glass of juice maybe three days in a row, I'll hardly be able to get out of bed. If I just have juice or peanut butter once or twice a week, I'm okay.

Jarrett Newbie
Jarrett
Posted
  • Author

Thanks all

lorka150 Collaborator
lorka150
Posted
Carla--What symptoms do you get from the molds?

Recently, I've cut out juices and dried fruits--but because if GI issues. I tried a Lara Bar yesterday, and got sick almost immediately after--

i heard that if you are allergic to mold, you cannot tolerate cashews... could that have been it?

CarlaB Enthusiast
CarlaB
Posted
i heard that if you are allergic to mold, you cannot tolerate cashews... could that have been it?

I haven't had problems with cashews, but I do with peanuts and pistachios. I generally buy almond butter.

jerseyangel Proficient
jerseyangel
Posted
i heard that if you are allergic to mold, you cannot tolerate cashews... could that have been it?

Hi Lorka--

I checked the label, and the one I ate only had almonds, pecans and walnuts. I get the same thing when I eat dates or raisins plain. This stuff is gonna drive me crazy!!

Thanks :)

CarlaB Enthusiast
CarlaB
Posted

I have to rotate raisins and dates and count them as a mold food. So, if I have a glass of fruit juice one day, no raisins, dates, fruit juice or peanuts for three days. I usually just avoid them altogether, then when I'm out I can eat them in a pinch. Well, that's what I used to do, I feel so bad now, I avoid them completely.

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      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

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      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 😅
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