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"weak" celiac disease?

Morisith

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Morisith Newbie
Morisith
Posted

Hiya!

I have recently taken both the blood test and the gut biopsy - both tests concluded weakly on the positive and the specialist told me to just move over to a gluten free diet completely. I have been on gluten-free for 3 weeks now and I feel a lot better and with more energy - but this could also be the added vitamin supplements.  I was told by my regular doc that did the blood test that I had a very severe lack of vitamins 2months ago and was started on a boosted dose via injections as my immune system was basically gone and if continued I was in the high-risk group for developing osteoporosis.  Anyways - it was hinted that celiac could have something to do with why I wasn't taking in vitamins through my diet, and so even if I don't get direct gut issues or feel sick directly after eating gluten, the long-term effects can be very risky. 

Despite all this, I kinda feel like I don't really have celiac since I don't react right away and don't feel sick from it? It sounds really odd, but I feel like I am not quite a celiac, but also not quite a "healthy" person and so I feel bad when I ask friends and such if we could order gluten free pizza when having sleep-overs (lol yes, sleepovers and we are 18-26), they don't mind, but I still feel bad asking since it's not life-threatening in any way. 

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tessa25 Rising Star
tessa25
Posted

I have celiac and never had an obvious reaction to gluten. The small intestine is damaged and I am prone to tendon injury because of it.

It sounds like your main symptom of celiac is vitamin deficiencies. You don't have to get sick from eating gluten for damage to be happening in your intestines.

Instead of asking your friends to eat gluten free pizza maybe order your own gluten free pizza so you don't feel you are bothering them. My friends joke that they love inviting me over because I bring my own food and it doesn't cost them anything.:D

Jmg Mentor
Jmg
Posted

Hi! and welcome to the forum :)

1 hour ago, Morisith said:

I have recently taken both the blood test and the gut biopsy - both tests concluded weakly on the positive

They may have been 'weak' but they were still positive for celiac. It could be that they caught it in the earlier stages or just the way that your own body presents - you'll find that individual cases vary wildly.

That said, you do still have to treat it seriously and don't let the 'weak' diagnosis fool you into thinking you can take risks that others can't. Just because at present your gluten symptoms are minimal, don't assume they always will be. As you carry on with the diet you may find your reactions to gluten change.

If you're ever tempted to slip, read this thread: 

 And of course read the new members advice thread which is much more positive :)

Hopefully finding this out so early will help you both in adjusting to the diet and minimising its effects on you. 

Best of luck :)

 

Ennis-TX Grand Master
Ennis-TX
Posted

IF you do have celiac it will slowly erode and degrade your health if you ignore it. You will develop more issues, you will get worse and worse with nutrient absorption and you own body will slowly attack your insides and damage you intestines causing more and more complications. I did not get mine diagnosed right for years til I got a bunch of other complications, allergies, food intolerance. And now have a very very limited diet. Fact is it almost killed me.

PS you have to be very strict on this diet, most ORDERED pizza will have CC issues with gluten -_-, you really should read the newbie 101 section. Celiac is a autoimmune disease, where you immune system gets confused with the gluten proteins and attacks your own body, Everyone is different in how severe and where it attacks. For me it attacks my gut, and my nervous system including my brain where it has caused near permanent brain damage, and nerve damage that even after 3 years has very bad consequences (I can not feel heat, lack of coordination, burn and cut my hands all the time)  The tinest amount of gluten can trigger the response and it can take weeks for your antibodies to wind down.

You are blessed you caught it early, you should follow the diet strictly make your own pizza, if you can order and get the gluten free crust where you can and make it a pizza making party? I have some lovely recipes for making homemade cheesy cauliflower crust where you blend the cheese into the dough come out super soft and you have to eat it with a fork. Try to find the bright side in it all at least you know the cause and at least it is just gluten.......one of my complications was Ulcerative Colitis....I can not have carbs or sugars either, I also developed lactose intolerance, and a allergy to corn.....you see take care of it now before you get other issues.

I am sure others can link you plenty of medical studies and show you a whole list of horror stories of not going gluten-free or what this disease can do untreated.  Please go read the newbie 101 and see about setting up your life for your new gluten-free lifestyle. Can be a bit overwhelming at first but once you get it down it becomes second nature and I will be the first to admit....makes you a damn good cook when you start eating stuff you make from scratch a lot.

Normally I would provide people with a food alternative list but as you are EU based most of my sources are not very good. I am sure some of our other members can point you at products you can use.

ironictruth Proficient
ironictruth
Posted
2 hours ago, tessa25 said:

I have celiac and never had an obvious reaction to gluten. The small intestine is damaged and I am prone to tendon injury because of it.

It sounds like your main symptom of celiac is vitamin deficiencies. You don't have to get sick from eating gluten for damage to be happening in your intestines.

Instead of asking your friends to eat gluten free pizza maybe order your own gluten free pizza so you don't feel you are bothering them. My friends joke that they love inviting me over because I bring my own food and it doesn't cost them anything.:D

Out of curiosity for myself, why are you prone to tendon injuries? 

tessa25 Rising Star
tessa25
Posted
5 minutes ago, ironictruth said:

Out of curiosity for myself, why are you prone to tendon injuries? 

malnutrition

ironictruth Proficient
ironictruth
Posted

What were the weAk tests? What did the biopsy actually say?

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Morisith Newbie
Morisith
Posted
  • Author

Thanks a lot for the replies! Yeah I talked a bit with an online friend who also got Celiac and they where really helpfull in sharing recipies that there is no alternatives to in the shops :)

I am slowly taking this more serious, and will check out the newbie thread too!

We usually order one or two big pizzas to share, and it a lot cheaper than one big and some smalls (a lot!). I found a nice place that takes CC seriously and have a separated prep and cooking area for it, so it's pretty safe! Not 100% as people can always slip up, but enough to trust once a month or so. 

Otherwise I have always made my food from scratch due to it being cheaper, so I don't think I'll miss convenciene food all that much! My biggest shock so far is that soy sauce have wheat as a main ingredient - soy sauce is my life lol. So scouring for replacements for that atm. 

Ennis-TX Grand Master
Ennis-TX
Posted
5 minutes ago, Morisith said:

Thanks a lot for the replies! Yeah I talked a bit with an online friend who also got Celiac and they where really helpfull in sharing recipies that there is no alternatives to in the shops :)

I am slowly taking this more serious, and will check out the newbie thread too!

We usually order one or two big pizzas to share, and it a lot cheaper than one big and some smalls (a lot!). I found a nice place that takes CC seriously and have a separated prep and cooking area for it, so it's pretty safe! Not 100% as people can always slip up, but enough to trust once a month or so. 

Otherwise I have always made my food from scratch due to it being cheaper, so I don't think I'll miss convenciene food all that much! My biggest shock so far is that soy sauce have wheat as a main ingredient - soy sauce is my life lol. So scouring for replacements for that atm. 

"Tamari" sauce is made gluten free in most cases.

NOW for a soy and gluten free alternative I really do suggest Coconut Secret Coconut Aminos, they also make a teriyaki sauce and a garlic sauce that are all GREAT in stir fries

 

PS check the cooking section here I have posted some great cheesy bread recipes both a cheddar biscuit and a garlic one. Works great with vegan cheeses especially Julian Bakery mozzarella, and using nutiva butter flavored coconut oil.  but I have a few friends who said it came out pretty good with real cheese.

Morisith Newbie
Morisith
Posted
  • Author

.

2 hours ago, ironictruth said:

What were the weAk tests? What did the biopsy actually say?

Honestly? I have no clue. The doc called me and said that it was a slight positive on the blood test, so she sent me to a specialist. Then the specialist sent a letter a month later and said there are no damage in my gut, but the reaction they tested for was present - so to switch to gluten free. 

I was also told I could get $100-$300 a month in support to buy gluten-free alternatives, but then I have to log every single reciept, and I don't have time for that, and then get a doctors note to send them every 6months that yes I do still av Celiac xD  My friend also warned me that gluten-free alternatives are often full of sugars and addatives, so avoiding them is in general just better :P

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      Son's legs shaking

      By knitty kitty · Posted

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    • lizzie42
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