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Does Anyone Just Have Celiac Only?

Moongirl

By Moongirl
in Coping with Celiac Disease

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MallysMama Explorer
MallysMama
Posted

Before discovering this website - I, too, would have never thought myself to be "lucky" to just have Celiac. Now, however, after reading many other's stories - I am lucky to have been diagnosed so early in life. I hope to avoid so many of the other life threatening troubles that can plague our unhealthy bodies.

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TCA Contributor
TCA
Posted

I think my son only had Celiac. He used have an intolerance for dairy, but that seems to have gone away now that he's been gluten-free for a while. Hopefully he won't develop any problems since we caught it.

My daughter is a whole different story. We've yet to figure out all of her problems. Hopefully her problems will improve and she won't develop any more.

I'm sooooo thankful to have found the Celiac. It's so hard to watch your kids suffer. I'm praising God for the diagnosis! :)

num1habsfan Rising Star
num1habsfan
Posted

i only wish I have just Celiac itself!! But like a lot of us in this post said, we went too long before being diagnosed. I have over 80 different problems that I didnt have before I got celiac and went gluten-free. and the list always seems to be growing!

maybe they should just come up with a cure for everything else, so we can finally all say we have just celiac :lol:

~lisa~

ebrbetty Rising Star
ebrbetty
Posted

I wish... I have Fibro, chronic Fatique, discord lupus, 3 herniated disks in my neck, hypothyroid, gerd, Dyspepsia etc :blink:

luvs2eat Collaborator
luvs2eat
Posted

I seem to only have Celiac... altho a year or so after diagnosis, my ANA blood level came back just high enough that my doc had me tested for Lupus. No symptoms or anything... just a tiny raised blood level that I get checked every year. Other than that... nothing but Celiac for me! (knocking on wood over here!!)

LaurieAnn13 Newbie
LaurieAnn13
Posted

So far, it's only celiac for me also.... Thank God!!!

I was diagnosed when I was 21, sounds like that is fairly young?!

Carolita Rookie
Carolita
Posted

I was told I had Candidysis one year before my celiac disease test came back +. I suffer from allergies and Raynaud's as well. My iron levels came back very low a few days ago (when my celiac disease test came back +) and that is making me feel miserable. I hope I don't see anything else coming on though, I think my nerves have been affected some as well since I'm always very jumpy and stuff (very nervous about everything).

I have a question. Have some of you gotten worst after going Gluten free then? I thought the damage was reversable. Now I'm really scared. I don't want to feel even worst.

Carol :(

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Lauren M Explorer
Lauren M
Posted
So far, it's only celiac for me also.... Thank God!!!

I was diagnosed when I was 21, sounds like that is fairly young?!

I was diagnosed at 21 also! I'm thankful it was at a fairly young age, and I think it was triggered only a couple of years before. At 21 I was old enough to take the diagnosis seriously, but young enough to (hopefully!) not have permanent damage.

- Lauren

par18 Apprentice
par18
Posted

Was Dx'd at 55 and as far as I can tell based on the positive diet results that is all I have.

Tom

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    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
    • Russ H
      KAN-101 Treatment for Coeliac Disease

      By Russ H · Posted

      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
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