Does it really matter if you have Celiac or "just" an intolerance?

JoanieP · 01-15-2014, 10:19 AM

Hello, to those of you who are Celiac and/or GF intolerant,

I was diagnosed as having Celiac Disease almost 3 years ago...which was what they called "latent" since my many tests during other problems never showed that in my blood work or even a biopsy given of my liver, or the biopsy of my gall bladder that was removed.

Needless to say, the medical testing for us is still in the process of "getting a better control". The important part is how "you" are feeling, your own personal assessment between you and your Dr. Everyone who is a Celiac does not have the same symptoms...there are over 100 types of symptoms in the real world. And of course there is the GF intolerance, which is more typically symptomatic in its own right.

I am a member of a great Celiac site which has so much information concerning this disease. It is called Celiac.com and has a great deal of inforamtion especially for those first few months of going GF.

Remember that no question or problem you are having is ever considered "insignificant"....this is something I am learning and dealing with my Dr's on a better communication.

Blessings in your desire to feel better and live well. Joanie

ifthespiritmovesme · 01-23-2014, 04:49 PM

Quote:

Originally Posted by Nanc

Sorry you got so sick! Glad you know about the testing, I did not know about that until I went to a new gastro dr for testing. He said at that point there was no need to test me, if I was feeling better off gluten, just keep going with it. I was fine with that. When I get accidently glutened, it is not pretty! My husband is not GF, so there is gluten in our house. It is way too expensive for our house to be completely GF. I have RSD and many other issues, I cannot prepare meals very well. He can only use one hand/arm, so he doesn't cook either. We are VERY careful not to cross contaminate, his food is separate from mine, I have a separate toaster, colanders, etc.

As far as bath and beauty products go, I have searched online and found a lot of info. There are some lists online that lists names of ingredients that you need to also look for...I will look for those for you. The Body Shop has a GF list that they will email you if you request it. If there is not a store near you, they do have a website. The shampoo I use is DermOrganic, it is labeled as GF. You can find it online or at Ulta. I found a huge bottle of it at TJMaxx for $19.99 and the first bottle I bought at Ulta was $18.99 for 1/3 the size! If you are near a Whole Foods, they have a lot of GF products in their cosmetic dept - lotions, creams, shampoos, hair styling products and the staff there is so helpful! I use either Peter Rabbit or California Baby body lotions (baby lotions) because they are more gentle and I am also allergic to shea, as well as some other ingredients. I find them at Whole Foods and Target.

I do not wear make up any longer, too hard to apply with RSD in my hands. It amazes me that gluten can be in everything though!!

Sorry I've been off here for a bit. There's a Mom's Organic Market near my daughter. When I go up there next time, I'll take a good look at their health and beauty stuff.

I am pretty careful about what I eat, and, yes! it's ridiculous all what contains gluten! Mostly I eat meat (local, organic and not grain-fed) and veggies and fruit, nuts, seeds, etc. I try to include flax, chia and hemp in most things I prepare. I have GF bread in the freezer, but don't eat much of it.

I would be in bad shape if I was allergic to shea! My son-in-law is from Ghana, where they make it, and they often give me a few pounds of it. I make my soap with it, and use it as a body moisturizer. My skin is so dry, it drinks it right up.

Aunt Bean · 02-21-2015, 07:01 AM

This is the first time I have looked at this forum. I have Parkinsons Disease and a member of the PD forum. In December I have bad intestinal crisis after consuming way too much delicious freshly ground kamut grain sourdough bread that I had started making. Gas and bloating extreme/ eyes became dry red and painful and I felt so bad. I had been almost gluten free before September when I received the sourdough starter for this wonderful bread and started making it. I went to the health department and she concurred that it very well could all be stemming from celiac or sensitivity...either way try going gluten free again. I am still making the bread for others that love it. Managed to not eat any for several weeks. This week ate a corner that broke off when I was bagging sliced bread for a friend...and within hours my eyes hurt and were so red and dry again...hadn't had that for several weeks...arthritis flared worse also and bloating discomfort.. Not fun is it??? Have created a few recipes and tried some from books that work well and will share some when I have time if you all have a recipe post...gotta go See ya soon Aunt Bean

hopefulmom · 02-14-2015, 11:54 AM

Hello,
My husband's family has celiac disease and both he and my daughter have celiac disease. My husband's sister thought that she had celiac disease but after getting tested it ended up that she had an ulcer that mimicked the symptoms...all she had to do was to take care of the ulcer. She doesn't need to eat gluten free.

I would definitely get tested but you have to be eating gluten for a few weeks before the test.

BTW our pediatrician also told me that our daughter didn't have CD. I just stood firm and told him that I wanted to blood test--period. It is a genetic disease.

Best to you,

Problemwithfeet · 08-21-2018, 07:53 PM

Quote:

Originally Posted by ifthespiritmovesme

I went gluten free in April 2013. Daughter went GF in hopes of alleviating digestive problems and recommended it to me 2 weeks later, she was so improved.

I requested to be tested for Celiac. Don't know what test was done, but my doc said I don't have Celiac. I have not had a biopsy done, and really don't want one.

Within 10 days of going GF, there was marked improvement in my chronic pain, energy level, and stiffness! I was experiencing restorative sleep for the first time in decades. Also, B-12 levels have skyrocketed.

Not all my problems are relieved, so there is more to be investigated, but the bottom line is that I cannot eat gluten!! If I slip up and indulge in something containing gluten, I will FEEL it within 3-4 hours, and it will stay with me sometimes a day or 2. The effect on me is an increase in myofascial pain and stiffness.

To me, it doesn't matter if I have Celiac or not - the treatment is the same, right? I just can't eat gluten. Do I need to find out if it's Celiac?

The treatment is the same. You sound like your intolerant, like me. I have also heard if you don't stay away from gluten, at least most of the time, it can turn into Celiac. We don't want that!

GeeLuv · 02-21-2020, 08:57 PM

Quote:

Originally Posted by ifthespiritmovesme

I went gluten free in April 2013. Daughter went GF in hopes of alleviating digestive problems and recommended it to me 2 weeks later, she was so improved.

I requested to be tested for Celiac. Don't know what test was done, but my doc said I don't have Celiac. I have not had a biopsy done, and really don't want one.

Within 10 days of going GF, there was marked improvement in my chronic pain, energy level, and stiffness! I was experiencing restorative sleep for the first time in decades. Also, B-12 levels have skyrocketed.

Not all my problems are relieved, so there is more to be investigated, but the bottom line is that I cannot eat gluten!! If I slip up and indulge in something containing gluten, I will FEEL it within 3-4 hours, and it will stay with me sometimes a day or 2. The effect on me is an increase in myofascial pain and stiffness.

To me, it doesn't matter if I have Celiac or not - the treatment is the same, right? I just can't eat gluten. Do I need to find out if it's Celiac?

Hi there! Same sitch here (not celiac, but intolerant). Im pretty much off it, but can have small amounts with little to know trouble. It still sucks though! I used to love baking. Now i have pretty much stopped because its just too depressing. GF baking just doesn't come out right...unless it's a box mix, but then that's loaded with sugar and that's not really allowed in my diet either. :/

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