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pugluver31902

Still Not Feeling Well

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Hi all, I was diagnosed in October and have been on the gluten free diet ever since. I am extremely strict, so its pretty near impossible that I am still ingesting gluten. The doctor even re-tested me, and all my levels were back down to normal. All my bloodwork is showing up fine, but yet I still feel bad. I never had even heard of celiac's before. I went to the doctor because I was getting constant acid reflux and was tired all the time. The doctor ran a battery of tests and celiac came back positive. I was shocked to say the least. I never have an upset stomach. Anyways, I had a biopsy and it confirmed it. But even after being on the diet for months, I feel no different. People told me I would have more energy, less headaches, just overall feel better. I fell NO different at all. Im kinda sad. If I go to all the trouble of staying gluten free, I would love to get some of the benifits I can actually feel! Has anyone else not felt ANY better at all since starting the diet?

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Guest cassidy

Are you sure that you have checked all cosmetics/personal care products? Most people feel a bit better even if they have other intolerances. Reflux was one of my big symptoms and it took about 2-3 months of being gluten-free for it to go away. I felt better other than the reflux but I wasn't convinced that it was going to fix that. Also, I have found that my symptoms last up to 3 weeks after being glutened. So, if you are glutening yourself every once in a while then you may still be feeling bad because of that.

If you are totally positive that there is no hidden gluten in your diet, then you may try an elimination diet. I have found that I can't have tomatoes, potatoes, chocolate and several other foods. It took getting rid of all of those for me to feel 100% although I did feel much better when I went off gluten. Many people can't have dairy.

Have you gone back to basics on your diet - just meat, veggies, fruit and rice? Your body needs time to heal and have preservatives right now are not helpful. Still I would think you would be feeling a little better.

Hope you figure it out.

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Some people respond VERY WELL to B12 shots (though if you do get them, make sure they contain folate - they hurt slightly more, but if you don't get the folate, you're just perpetuating an imbalance). If your celiac has been activated for a decent period of time, you're likely deficient in the B vitamins especially, but probably all vitamins/minerals.

Another thing is dairy products. MOST folks with Celiac seem to have an intolerance for it, at least at first. This is, in part, because the lactase that you need to digest lactose comes from the villi in your small intestine. If those are flattened and miserable, you can't digest dairy. Lots of folks end up adding it back.

But I'd definitely do the vitamin B thing and see if that works. It did not for me (I actually had okay levels), but for some folks it is like night and day. For me, I just finally lost the fatigue...it took a few months. I did quit most grains, and that seemed to help. And if you're eating replacement foods like gluten free bread and cookies and the like, that might be too much carb for a protein-type metabolism. Just some other thoughts.

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Yes, I have checked all my cosmetics, even called all the manufactures of my make-up and medication. Bought a new toaster and stuff like butter and peanut butter. There is no gluten containing food in my house, and we dont eat out. Bummer. Would having a lactose intolerance just make me really tired and get acid reflux? I had always thought you had stomach problems with that. I did try the elimination diet, nothing seemed to help. I went to the allergist and had a HUGE allergy work up for food, environmental, and household allergy's. They were all negative. I will ask the doc about a vitamin b shot. I know that all my levels were ok, but maybe I just need that extra boost!

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Maybe it's a casein intolerance rather than a lactose intolerance. Casein intolerance would be similar to gluten intolerance.

I second the idea of going to a meat, veggies, fruit, and rice diet. After a couple months, or when you feel better, add back in other foods one at a time.

If you still don't feel better on that diet, I'd look for what else is making you tired all the time. Some of us have other illnesses in addition to the gluten intolerance.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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I agree with previous posts, there could be other intolerances as well, I thought I would be able to drink milk after going gluten free, i was very wrong, even a big amount of butter makes me sick, I switched to soy milk but it doesn't seem much better, though I don't know if it is the soy milk or the bacon I ate :D Some people also can't tolerate soy, so try eliminating those from you diet and taking a vitamin supplement with your meal.

Have you been put on any antacids? I was put on Prevacid 15mg a day, now 30mg a day and it does not help my stomach but it helps the acid reflux. Your body needs time to heal and it is very likely you still have acid reflux if it hasn't been treated even though you are gluten free.

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This is why I am having such a difficult time: I cannot pinpoint ANYTHING that brings any symptoms on. I have the fatigue and acid reflux constantly. There is NEVER a time when I dont. I dried all the elimination food, but couldnt find anything. I NEVER get cramps or D or bloating or any symptoms at all really. If the biopsy hadnt confirmed the Celiac's, I would have been willing to bet my savings that I didnt have it. Lol. Im getting so frustrated! Even my doctor was shocked when it came back positive. He had just thrown that blood test in with a bunch of other tests. The biopsy did show flattened villi, but I really was never sick sick. I just dont know whats going on. :(

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It will take time to heal. Your villi didn't get flattened overnight, and it's going to take time.

My 8 year old daughter has acid reflux and drinks Bragg's apple cider vinegar daily, and a little extra if we have something with dairy or tomatoes for dinner. My husband gets it when he eats tomatoes and does the same thing.

My Lyme doc has me taking Prolisec for the reflux since my endoscopy showed I had it and I'm on so many medications. It's helped a lot.

I'd try the natural apple cider vinegar first, and if it doesn't work, then maybe try the Prolisec. It's now available over-the-counter.

As for the fatigue. It should get better as you heal. It will take time.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Guest cassidy

Sounds like you have had a tough time. Have you tried apple cider vinegar for the reflux? I never thought it would work but one day I couldn't stand it anymore and I drank some vinegar and the burning went away in a few minutes. I later got some vinegar capsules because drinking vinegar was horrible. It is free and probably in your kitchen, maybe it will help.

Other things that helped my reflux were drinking aloe and digestive enzymes.

I had surgery for reflux when I was 10. They told me the surgery had reversed and that I needed it again. I was scheduled for it last February. My mom told me about celiac and I went gluten-free in January. I told my gi docs and my surgeon and they all laughed and said I didn't have celiac, I had reflux. I cancelled my surgery because I was doing better and by March or April my reflux was gone. Good thing I didn't listen to them. I'm pretty sure I had celiac from birth and no one ever caught it. At least the surgery helped with the reflux for a while but I sincerely think that if I had gone gluten-free I never would have needed the first surgery or been so sick.

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Have you tried apple cider vinegar for the reflux? I never thought it would work but one day I couldn't stand it anymore and I drank some vinegar and the burning went away in a few minutes. I later got some vinegar capsules because drinking vinegar was horrible. It is free and probably in your kitchen, maybe it will help.

LOL We posted about the same time with the same idea!

Be sure it's natural apple cider vinegar ... the processed kind doesn't have the same health benefits. I add a Tbsp. to a glass of water. Bragg's recommends putting a little honey in it.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Ha, I'm a weirdo, I was always avoiding vinegar [white one is the one we always have] because I thought it would worsen reflux! I had no idea it could help it :D I dont know where I got that idea hehe

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Too funny that your responses were about the apple cidar vinegar, which I just bought! I just havent had the nerve to try drinking it yet. As of now, I am on the highest dose of prevacid, and I take mylanta and prilosec. Thank you for your responses though. I feel better knowing Im not alone. Thank you so much!

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I hear what you are saying. Sometimes it takes time to feel better. Took me about 6 months or so. And gosh were those 6 months the worst recovery periods ever. You are not alone


Diagnosed 11-11-05 after 3 months of major symptoms, including 2 hospitalizations and 7 ER visits for dehydration and syncope. Otherwise, I had all "normal" blood tests and major scans. During those 3 months, lost 20 pounds, all my muscle tone, and ultimately could not walk for 2 days. Spent 6 days during the second hospitalization hooked up to IV and STILL passing out IN BED due to malnutrition with doctors staring at me AS IF it was all IN MY HEAD

Other related symptoms:

Osteopenia

Hypothyroidism

Gluten Ataxia - three "nodes" recently found in my brain (thought I had MS)

Muscle weakness

Fatigue

Chronic Constipation

45 pound weight gain since going gluten-free!

gluten-free since 11-11-05. Cannot eat bananas, potatoes, or spinach. Recently reintroduced yogurt into my diet and able to tolerate plain yogurt with sugar.

HATE the diet but psychologically tolerating it for my health.

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Ha, I'm a weirdo, I was always avoiding vinegar [white one is the one we always have] because I thought it would worsen reflux! I had no idea it could help it :D I dont know where I got that idea hehe

MOST vinegar will cause you to be more acidic. Apple Cider Vinegar, if it's natural, is the exception to the rule. It has many health benefits associated with it and will actually help alkalinize your body.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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How do you know if you have reflux? My GI said that I had it from my endoscopies (2), but I don't feel any burning or pain in my throat - the only pain like that that I have is a sharp stabbing pain on my left side under my ribcage. Comes and goes periodically - not after eating or anything related to food that I can tell. Would the apple cider vinegar help that? Is this Brags available at the regular grocery store?

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Dionnek - that's crazy that you mention that, I have the same thing, a horrible stabbing pain in my left side ribcage, but the ribcage sticks out more than the right side so that threw me off, I don't know if it is an ulcer or not but I've had it for a long time [about 8 months], so if it is an ulcer it has to be pretty bad by now because it has affected my whole left side, I can barely sleep on that side anymore but I have no bloody stools at least.

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