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Anyone Have Any Thoughts On Celiac Disease?


sue1234
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I saw it on another recent post some members talking about celiac. I have PMed a couple of members over the last week to ask them if they were tested for celiac since their gi issues were on the severe side. I have had bloating for about 10 years, sometimes so much that I am short of breath. This preceded my POTS by about 5 years. I just went to a gi doctor yesterday and she agreed that celiac or gluten-intolerance COULD be a reason for my bloating, so she ordered all the anitbody testing for it and will probably do a scope to biopsy things. Then, I am going to go on a voluntary gluten-free diet to see if things change for the better. I have read soooo many gluten stories about people that didn't test positive, but eliminated gluten from their diet, and their gi problems vanished along with alot of other health issues. That all makes sense, as if the small intestine is damaged from gluten, we would not be absorbing our nutrients. Just remember that if you go to get tested, you still need to be eating a diet WITH gluten products in it.

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Celiac has an incredibly wide range of symptoms from bloating, diarrhea to headaches and fatigue. I did the antibiody test and they came back neg for celiac but positive for IBD. When I stopped eating gluten my symptoms went away and when I tried a piece of bread again I got very sick. My colonoscopy was neg but those rarely show celiac because celiac affects the small intestine. The only way to check the small intestine is to do an endoscopy which is a much more serious procedure. I decided since I got so sick whenever I ate anything with gluten it didn't matter what the endoscopy said I couldn't eat gluten anyway so it wasn't worth the risk.

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I'm in the process of this with my Rheumatologist. She says the tests aren't 100% - a 6 week gluten-free diet is in my near future. If it is causing some of my symptoms, and I can feel better without it, it's worth doing this.

From what I hear, it can be pretty damaging on your system if you continue eating it and are intolerant. Also, it can show up 'anytime' - so my whole childhood eating cake and bread maybe wasn't an issue, but this intolerance could be recent. I also read online that it's more common in people of European Ancestry (andyone hear that before).

WebMD:

(This makes me wonder - COULD it affect some of us?)

# Peripheral neuropathy (nerve damage): Vitamin deficiencies of B12 and thiamine may contribute to nerve damage with symptoms of poor balance, muscle weakness, and numbness and tingling in the arms and legs.

Mayo:

# Celiac disease symptoms can also mimic those of other conditions, such as irritable bowel syndrome, gastric ulcers, Crohn's disease, parasite infections, anemia, skin disorders or a nervous condition.

While I love pastries, crackers, etc. I guess I'm going to have to do this. If it's really adding to my illness and can make me better, it's important I try it. I want to feel better. Hoping I'll drop some pounds, too, and I can still have rice and potatoes. :(

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Boy, it's amazing how bad some people can feel with gluten issues! It's nice to hear that a couple of y'all have already found you had an intolerance to it. I'm going to be with Cat_Lady, and be doing my trial without it, but only after my gi work-up, as I may have h.pylori also, so probably will be getting the endoscopy. Since I can't shop in a store, I have already started shopping for some gluten-free foods off of Amazon. Good thing we grow and mill brown rice--that is the one grain I can eat for sure! And we grown veggies, so that department is taken care of also. I just needed to get some "snack" foods, healthy of course. I am hoping I will also see a weight loss as my gi system improves.

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While I love pastries, crackers, etc. I guess I'm going to have to do this. If it's really adding to my illness and can make me better, it's important I try it. I want to feel better. Hoping I'll drop some pounds, too, and I can still have rice and potatoes. :blink:

Betty Crocker makes a gluten-free (GF) brownie mix and a GF cake mix. The brownie mix is delicious.

Corn tortillas can be often used in lieu of bread. The only decent GF bread I've ever found comes from a dedicated bakery in the St. Louis area. The pre-packaged store bought stuff is really terrible.

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Eliminating gluten from my diet has done more for me than I ever imagined. I had ataxia, probably gluten ataxia, that went away after one year on the GF diet. My nocturnal myoclonus and insomnia are from gluten but are responding to taking aminos theanine and 5HTP. KOW. This has led me to believe that many of my symptoms are really from nutritional defiencies. I was diagnosed as a celiac in 2007, based on damage found on my EGD, my DQ2 gene and my reaction to the GF diet ... but my CFS/FM started in 1990 and I successfully ate gluten up until 2005. I'm 54 and have been a DQ2 all my life ...

FWIW ... most celiacs I know can eat small amounts of gluten without reacting to it .. NOT ME !!! <_< IMHO, the celiac diagnosis needs to be re-evaluated. If most celiacs can handle small amounts of gluten without having a reaction, the who's really reacting to gluten. Dr. Clark explains gluten sensitivity here ...

I'm currently looking into which nutrients can help with OI/dysautonomia and am leaning towards aminos since I responded so favorably to theanine and 5HTP. B vitamins are important for nuero functions but my labs showed that I was great on B's. The aminos that I was tested for were good but I wasn't tested for all aminos. I'm still learning the difference between which aminos are essential and which ones our bodies can produce. I don't know if my body is actually creating the non essential ones since my body has only been healing since 2005. Of course we need all kinds of nutrients but I'm already taking C, EFAs, E, Minerals, etc etc ...

I still have OI, but that doesn't mean you will after going on the GF diet because everyone's body's are so different. You may or may not have ataxia or myoclonus, etc etc ... In my celiac support group mtgs and the various GF boards, I found that many gluten sensitive reported having symptoms like mine that went away after going GF. Dizziness is the term I hear used most often and can mean ataxia, OI, hypoglycemia, etc.

BTW. I don't know why doctors are sticking to the 6 week or even 3 months trial of the GF diet when Dr. Hadjivassilou tells his gluten ataxia patients that a strict gf diet is mandatory for one whole year. It took me a year to start to walk normally and there weren't any signs at all that I was going to be able to walk again. All of the sudden after one year on the diet my balance issues were gone, then my arms became less heavy and eventually my vision improved ... I was shocked to say the least ... :blink:

HTH ... Marcia

PS. I'm currently on a Paleo / low carb / low oxalate diet which has helped me in many ways but hasn't yet fixed my OI or PEM. Many feel that dairy, soy and corn are as damaging as gluten because these are high in glutamates and glutamates are excitotoxins. I feel great, at rest, as long as I stick to this diet so it's worth it for me.

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I'll ask my doctor about 6 weeks today...I guess if I'm seeing ANY improvement she wants me to stay on it. It can take longer, from what I understand, to really start to heal.

I wonder if I even have this, but I guess it's a possibility.

Thanks about the brownie mix/corn tortilla comment. I love tortillas!

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