Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

"weak" celiac disease?


Morisith

Recommended Posts

Morisith Newbie

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. 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



tessa25 Rising Star

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

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

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
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
5 minutes ago, ironictruth said:

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

malnutrition

ironictruth Proficient

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Morisith Newbie

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
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

.

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

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,103
    • Most Online (within 30 mins)
      7,748

    Judithann
    Newest Member
    Judithann
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • TerryinCO
      Thank you for the information. I did order/receive GliadinX to have on hand in the event of suspected exposure.
    • Dc91
      Just had a letter through from the Celiac team, they’ve diagnosed me through my bloods, no endoscopy/biopsy needed. I guess I’ll be sticking around on this forum and I’m sure I’ll be back soon. thanks for all your help 
    • Ryangf
      Hi everyone I’m somewhat new here- at least this is my first time posting.    I have been having persistent stomach issues since July of 2024- so around 7 ish months I’ve been having issues. At first I thought it was just a bout of constipation because I had had that issues before but- it simply did not go away at first I went to urgent care for my bloating and stomach pain and constipation and they basically didn’t really check anything and just passed it off as constipation and gave me stool softeners. Then I started having joint pain and a sharp stinging sensation in my back that debilated me and urgent care passed it off as muscle spasms. Then I finally went to my primary care doctor and they put me on a lowfodmap diet- and that didn’t help…(I was still eating gluten product),then I told her that didn’t help and then she didn’t contact me for several weeks not even trying to pinpoint the cause of my discomfort. So I started doing my own research from reputable sites- and analyzed my symptoms. Then suddenly I started losing weight rapidly 23 pounds in a month to be exact and I had like pale yellowish stool. Then I started realizing maybe it was gluten that was irritating me and I cut it out and started feeling a little bit better but still had some discomfort. Then I contacted my doctor again for a blood test for it and it came back negative. But I still was worried at least if it could be anything else going on in my stomach though I was sure it was celiac disease. Then after me practically begging her to let me get an endoscopy eventhough she insisted I was fine- I choose a doctor to see that was not my primary care doctor to evaluate me and they recommended I get an endoscopy…and I had an endoscopy a few weeks later. That came back negative for celiac with my biopsy too and no other damages from my ultra sound I got or anything. So I was naturally extremely confused. So I started to feel like maybe I was over exaggerating. But then I started researching on endoscopies- and found out for a confirmed positive blood test and endoscopy I had to be CURRENTLY eating gluten something neither of my doctors notified me about nor the GI specialists. So I realized my doctor probably would not order me another endoscopy…and also I just decided do I really need to go through the pain of eating gluten again for an endoscopy- when I could just stop eating it? So I weighed it and at the moment I decided- I would not get an endoscopy and just be gluten free- and for a little bit- I was fine- then my stomach started hurting again- a few times could’ve been from cross contamination but I also saw that a lot of the gluten free products I was eating contained corn and I tested it and stopped eating corn products for a few days and felt better. So I also did research on corn and found that some people with celiac disease can respond negatively to corn because it has a protein in it similar to gluten. So I cut that out completely and felt better for a long time. Except for ocassional corn cross contaminations I felt fine- until recently where I think I may have had corn products a few times consistently- and not noticed despite my stomach upset because I had been dealing with stomach issues so long I thought it was the norm. Now for the past few days possibly because of the consistent corn exposure for the past month I’ve been having an upset and bloated stomach eventhough I stopped eating the corn- because I think (though studies are not sure on corn damaging celiacs stomach lining) corn may have been damaging my stomach lining again during that time- and I may be developing some new intolerances or conditions. I want to go get that checked out but I don’t want to be gaslighted by doctors again- cause it makes me feel crazy. And I’m also debating on whether or not I want to go through the pain and stomach damage again for 2-6 weeks to really confirm if I have celiac disease- and I’ve been even more reluctant because now I am in classes again and I have to be in class consistently standing up a lot (culinary class) for multiple hours on end and I don’t think me being fatigued and sick and in pain is going to be good for me during that time. Should I get an endoscopy to confirm if I have celiac disease again this time actually eating gluten up to that point- or should I just first try to figure out what intolerances I may have developed or other conditions via a doctor- or wait for a while until my stomach lining has repaired sufficiently or at least enough before getting an endoscopy and a blood test again at a time when I am not busy a year or so from now while maintaining a gluten free corn free diet until my endoscopy is booked and then I will begin eating gluten and corn up until the endoscopy? (Sorry I know that was a lot.) 
    • trents
      I have no specific recommendations but I would suggest looking for products that are advertised as produced in a dedicated gluten-free facility. That should eliminate one possible route of cross contamination. It doesn't guarantee that none of the ingredients going into the product are totally gluten free but is should eliminate adding more CC to the mix via processing machinery.  One of the issues you may be experiencing is that testing has shown that a significant percentage of "Certified Gluten Free" products can test far in excess of 10ppm. There was an article appearing in this forum back last summer outlining the results of testing that showed this to be true. So, it may be somewhat of a pig in a poke when you buy this stuff, regardless of how it is billed. It may be safe for you if it actually fits within the stated requirements of it's billing.
    • Hauama
      I can still have a reaction from “certified gluten free” products I don’t like having to use the eat and see what my body does approach are there really any purely gluten free products or do I just have to make all of my own food? 
×
×
  • Create New...