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SchnauzerMom

By SchnauzerMom
in Coping with Celiac Disease

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SchnauzerMom Rookie
SchnauzerMom
Posted

I just joined today. I have been reading and learning here for several weeks. I have never been diagnosed with celiac or gluten intolerant. The main reason is because I can't afford insurance and the price for the tests would have to come out of pocket and my pocket doesn't hold much. My DH and I both have problems that the doctor called IBS. It was my DH's idea to learn about celiac disease. We have been on a gluten free diet for about 2 weeks now and both of us can tell the difference. I get really bad acid stomach when I eat something with gluten. Yesterday I ate some candy that had gluten and was sick most of the evening. It may be inconvenient but the diet is worth the trouble just to be free of pain. A book I have said to concentrate on what you can have instead of what you can't. I have been doing some baking with alternative flours and have gotten some really good results. Our eating the last couple of weeks has been the healthiest in years.

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Corkdarrr Enthusiast
Corkdarrr
Posted

Welcome to the forum! I'm glad you found us and if you have any questions, don't hesitate to ask. Odds are that someone here has already wondered the same thing and would be happy to help.

Courtney

jerseyangel Proficient
jerseyangel
Posted

Well hi and welcome to the board! :D

Looks like you and your husband figured out for yourselves that you have problems with gluten. The positive response to the gluten-free diet is a valid diagnostic tool--it's great that you figured this out, and you now can start to feel better and be healthier in the long run.

Continue to read through old posts for tons of ideas--and I hope you'll jump in and post often! :) Let us know if there's any way we can help.

TinkerbellSwt Collaborator
TinkerbellSwt
Posted

Hello and welcome! You will find lots of answers to many questions on this board. If you have any yourself, please dont hesitate to ask. This is the best group of people I have come across.. someone is always around to help.

I am glad that you both just decided to stick with the diet without those test results. You will find quite a few people on here have done the same thing. Keep up the good work!!

Guest nini
Guest nini
Posted

welcome welcome! and yes positive dietary response is a very valid diagnostic tool and I'm glad you guys have figured out that gluten is a problem for you.

If we can help you with any recipe conversions or product questions, never hesitate to ask!

Canadian Karen Community Regular
Canadian Karen
Posted

Hi and Welcome!

I'm glad you found us - there are sooooo many here who have discovered the benefits of gluten-free living without actually going through the gauntlet getting an official diagnosis. The best way to determine if you have a problem with gluten is by applying the diet anyway, as both bloodwork and biopsies have a high rate of false negatives.....

Any questions you have, no matter what it is, just go ahead and ask us, and we'll try our best to help out. There's a great bunch of really knowledgeable people here who will chime in......

Again, Welcome!

Karen

lonewolf Collaborator
lonewolf
Posted

Welcome! Sounds like you're on the right track. Good for you to take your health into your own hands! Please stick around and feel free to ask lots of questions.

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zachsmom Enthusiast
zachsmom
Posted

nice to meet you .

dlp252 Apprentice
dlp252
Posted

Hello and welcome! Dietary response is just as valid as other methods! My GI doctor (mainstream) doesn't agree with the Enterolab testing, but he can't argue with a positive dietary response!

spunky Contributor
spunky
Posted

Welcome!

I never got any diagnosis either. I've been gluten free for 9 months and feel better than I have for 15 years.

Actually, I forgot what it was like to just live, and not always worry about bathrooms, farting around people, feeling terrible, not being able to plan on doing things because you don't know how bad you're gonna feel, and all of that. I really forgot what it was like to just live. Forget the trouble of leaving out the gluten! Feeling really good and getting your life back is well worth the trouble for me!

Gamecreature Rookie
Gamecreature
Posted
Welcome!

I never got any diagnosis either. I've been gluten free for 9 months and feel better than I have for 15 years.

Actually, I forgot what it was like to just live, and not always worry about bathrooms, farting around people, feeling terrible, not being able to plan on doing things because you don't know how bad you're gonna feel, and all of that. I really forgot what it was like to just live. Forget the trouble of leaving out the gluten! Feeling really good and getting your life back is well worth the trouble for me!

I'll second that. I've just begun my diet (gluten-free for 5.5 weeks now) and while my body is still healing, the difference is great. A lot of the stuff I took for granted before has now ceased to be a problem. Good luck. Oh, and be sure to check out the "newbie survival kit" in Nini's sig.

Creative-Soul Newbie
Creative-Soul
Posted

Hello and welcome! Like you I couldn't afford all the "official" tests, and my wonderful doctor agreed with me that my dietary response was enough proof that I was gluten intolerant/celiac. There are wonderful people here, and you have a safe place to gain support, get advice and vent when you need to!

SchnauzerMom Rookie
SchnauzerMom
Posted
  • Author

Thanks everyone for the great welcome. I have already learned a lot here. I think this is a great place! :D

Guhlia Rising Star
Guhlia
Posted

Just saw your post now. Welcome welcome welcome!!! :D

bearly Newbie
bearly
Posted

I too was just diagonised on the 2nd of Oct. Has been a really rough month getting use to the diet with no improvement. Was back to the Dr. today and even with a positive bisopy he thnks there may be something else going on. Also did some research and found the protonics i'm on is not gluten free and maybe that is part of the problem. Does anyone have any ideas or suggestions. Am open to any help I can get right now.

Ursa Major Collaborator
Ursa Major
Posted

SchnauzerMom and Bearly, welcome to this board!

Bearly, you will get a much better response if you start your own thread to ask your question.

But if your probiotic has gluten, it is definitely a huge problem, and you need to switch to one that is gluten-free to get better.

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      Yes.  I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy.  Numerous dental visits and several professionally made bite plates  did very little to help with symptoms
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      Cristiana makes a good point and it's something I've pointed out at different times on the forum. Not all of our ailments as those with celiac disease are necessarily tied to it. Sometimes we need to look outside the celiac box and remember we are mortal humans just like those without celiac disease.
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      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

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      Also suffer badly with gluten and TMJD, cutting out gluten has been a game changer, seems to be micro amounts, much less than 20ppm.  Anyone else have issues with other food stuffs? Soy (tofu) and/or milk maybe causing TMJD flare-ups, any suggestions or ideas? --- I'm beginning to think it maybe crops that are grown or cured with glyphosphate. Oats, wheat, barley, soy, lentils, peas, chickpeas, rice, and buckwheat, almonds, apples, cherries, apricots, grapes, avocados, spinach, and pistachios.   
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      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
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