Newbie- What Are These Symptoms?

[desperate]

I have GERD, gastritis, esophagitis, hiatal hernia all discovered during an upper endoscopy. GI doc said there was some flattening of villi but biopsies came back negative. She said it was inflammation. Blood tests for Celiac came back negative. She told me to go gluten free and see if I felt better. I did that 4 days ago but am not seeing any improvement in my symptoms which are mostly neurological and only occur every day after I eat lunch, no matter what I eat and they happen sometimes while I am eating lunch.

My symptoms are: dizzy, headache, eye pressure, brain fog, hard to concentrate, slurred speech, dry mouth, dry eyes, blurred vision, flushing, weakness, fatigue, nausea, bloating, gas.

I thought maybe this was Celiac or gluten senstivity or intolerance. I also wonder if these problems could be caused by my birth control, my Sjogrens, my Raynauds, or IBS-D.

I have had every blood test imaginable. Everything came back normal. No lupus, thyroid problems, do diabetes, no vitamin or mineral deficiencies, no anemia.

I am a 36 yr old female, exercise regularly, and normal weight.

Any thoughts on what this could be?

[JH85]

I'm new to this website and forum, however my mother has been celiac for 19 years and I have had complications from diets showing that I more than likely have been celiac since I was 20 (6 years ago) Not sure what all of those symptoms point to but I do know that it will take much longer than a few days, weeks and usually months to have a notable change in symptoms. The villi in your GI tract can take a very long time to heal depending upon the damage done. You mentioned Raynauds, my wife has a few auto-immune diseases such as Raynauds caused by Scleroderma. As with many other Auto-Immune diseases through research they can be not always HEALED but can slow down the advancement of such horrible diseases. My wife tries ever so hard to stick to a gluten-free diet but with her job which requires a lot of travel either in state or out sometimes, its not always easy. When she does "cheat" her stomach tells her. My suggestion would be to stick with a STRICT gluten free diet. Its very difficult and never really gets any easier. Do research on EVRYTHING you eat and do not "cheat" this will just cause you to spiral back to where you started. Lack of a better word its gonna suck, for me I have only been strict for about a month. Not all symptoms have been eliminated but the vast majority have subsided. Informing family and friends will help you along the way, if those closest to you don't know you are trying this that will make it that much harder. There is plenty of sources to refer to and research that has been done and this forum is a great place to start. Sorry for running on here, just hope that it helped a tiny bit.

[ravenwoodglass]

GI doc said there was some flattening of villi but biopsies came back negative.

I don't understand how your doctor could say villi were flattening but it was a negative biopsy. Your doctor may be one who won't diagnose until villi are totally gone. Flattened villi are diagnostic of celiac. All your others issues point to that also. False negatives are common on both blood and biopsies. Do stick with the diet. It may take some time for you to feel better but hang in there. Read as much as you can here as there is much more to the gluten-free lifestyle than just reading labels. Eat as much whole unprocessed homecooked food as you can and do drop dairy for a bit until you have healed as it will be hard for you to digest before the villi return to normal. I hope you feel better soon and ask any questions you need to.

[pain*in*my*gut]

I have GERD, gastritis, esophagitis, hiatal hernia all discovered during an upper endoscopy. GI doc said there was some flattening of villi but biopsies came back negative. She said it was inflammation. Blood tests for Celiac came back negative. She told me to go gluten free and see if I felt better. I did that 4 days ago but am not seeing any improvement in my symptoms which are mostly neurological and only occur every day after I eat lunch, no matter what I eat and they happen sometimes while I am eating lunch.

My symptoms are: dizzy, headache, eye pressure, brain fog, hard to concentrate, slurred speech, dry mouth, dry eyes, blurred vision, flushing, weakness, fatigue, nausea, bloating, gas.

I thought maybe this was Celiac or gluten senstivity or intolerance. I also wonder if these problems could be caused by my birth control, my Sjogrens, my Raynauds, or IBS-D.

I have had every blood test imaginable. Everything came back normal. No lupus, thyroid problems, do diabetes, no vitamin or mineral deficiencies, no anemia.

I am a 36 yr old female, exercise regularly, and normal weight.

Any thoughts on what this could be?

You have Sjorgen's? That could be the cause of every one of your symptoms...

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Many other conditions can cause flattened villi, not just Celiac disease. However, you could have Celiac and just be one of those people who have negative bloodwork. Keep eating gluten free and give it several weeks to several months and see if you notice an improvement (four days is not nearly enough time). If not, I would go back to the rheumatologist and address the Sjorgen's syndrome and it's many manifestations and see what he/she would suggest.

I have been tested for Sjorgen's as well (it was negative several years ago), but I am seeing the rheumy at the end of September to get tested again. I have many of the same symptoms as you do (almost all of them, actually). So, we will see...

Good luck and keep us posted!

[desperate]

You have Sjorgen's? That could be the cause of every one of your symptoms...

Open Original Shared Link

Pain-Thank you so much for that link about Sjogren's. I had no idea it could lead to all of these symptoms. I have a very bad Rheumatologist. He doesn't really listen to me. He laughed and thought I was crazy when I told him all of my symptoms that occur after lunch. He told me he never heard of that and to stop eating lunch. I tested positive for Sjogren's in the blood test and eye test (Shimer's I think it is called). He offered no help or treatment of it. I went to another Rheumatologist for a second opinion and he told me there was nothing he could do for me and to not come back. So I put any thoughts of treating it out of mind and just figured I would just have to live with it. But I never realized all the symptoms it can cause identified in that link. Thank you so much for that.

I am sorry you share these same problems. It is so debilitating and it doesn't help when doctors don't help you. I hope you have better luck than me. I will now also look at ways to maybe treat Sjogren's and seek another Rheumatologist.

Keep me posted on your progress too. I look forward to hearing more about what your tests and doctors say.

[pain*in*my*gut]

Pain-Thank you so much for that link about Sjogren's. I had no idea it could lead to all of these symptoms. I have a very bad Rheumatologist. He doesn't really listen to me. He laughed and thought I was crazy when I told him all of my symptoms that occur after lunch. He told me he never heard of that and to stop eating lunch. I tested positive for Sjogren's in the blood test and eye test (Shimer's I think it is called). He offered no help or treatment of it. I went to another Rheumatologist for a second opinion and he told me there was nothing he could do for me and to not come back. So I put any thoughts of treating it out of mind and just figured I would just have to live with it. But I never realized all the symptoms it can cause identified in that link. Thank you so much for that.

I am sorry you share these same problems. It is so debilitating and it doesn't help when doctors don't help you. I hope you have better luck than me. I will now also look at ways to maybe treat Sjogren's and seek another Rheumatologist.

Keep me posted on your progress too. I look forward to hearing more about what your tests and doctors say.

OMG, really? You need to find a new rheumy!!! Having an autoimmune disease is frustrating enough even with a good doc! Holy crap, I can't believe 2 docs blew you off like that. That's disgusting. Period.

I am so glad that link helped! I never know if I am being too link-happy when I reply with answers. I am a google freak and I believe we all need to be our own advocates and have as much info as possible. Too many of us slip thru the cracks because the docs don't know everything they should!

I will keep you posted!

[AVR1962]

I have GERD, gastritis, esophagitis, hiatal hernia all discovered during an upper endoscopy. My symptoms are: dizzy, headache, eye pressure, brain fog, hard to concentrate, slurred speech, dry mouth, dry eyes, blurred vision, flushing, weakness, fatigue, nausea, bloating, gas.

I thought maybe this was Celiac or gluten senstivity or intolerance. I also wonder if these problems could be caused by my birth control, my Sjogrens, my Raynauds, or IBS-D.

I have had every blood test imaginable. Everything came back normal. No lupus, thyroid problems, do diabetes, no vitamin or mineral deficiencies, no anemia.

Any thoughts on what this could be?

Your situation is very similiar to my own. I was having much of the same symptoms, went thru tons of tests, etc. I went off glutens for 3 weeks, and at this point it was not real clean.....I basically stopped eating bread and past just to see if this was my problem and just that much I realized it was the issues. I still had the blurred vision, the off-balance, speech issues, terrible memory, etc. Realizing this was at least part of my problem I really tightened up my diet, read packages and avoided all glutens. It took over a month on a very strict diet for my balance to come back. Then I got hit again and I knew my diet was good....realized then I had an intolerance to high fructose which caused me the same dizzy and foggy thought processes.

I was still having symptoms and docs wanted to send me to another specilaist and had to have a copy of my blood work.......oh, talk about make me sick! Doc, who actually told me I DID NOT have anemia (something I have had all my adult life) also did not tell me that I was vitamin deficient in many areas, not borderline.....I was below normal levels. So, unless you have seen the copy of the blood work be very careful in taking that all is good. You could be borderline in many areas and feeling the effects of vitamin deficiency. I looked all the medical coding up online. Started taking all the vitamins that I was defiecient in and slowly I started improving.

There are great sites online to find out symptoms from various vitamin defiencies. Balance could be from lack of vit D or anemia....I take 1000 IUs 2x daily. Sounds like you may have some neuropathy issues which zinc and vit B12 might be able to help....I take 30 mg zinc 2x daily. I also take a daily iron supplement, multi vitamin, calcium, vit E, magnesium. I was having hair loss which is a sign of loss of silicon. Another terrible symptom I had was flinches, muscle spasms and restless leg and found a diet rich in potassium foods helped.

I too am taking birth control and questioned that myself. For me, it was the glutens. Trying a very strict gluten free diet and getting all the vitamins I needed got me back on track.

[desperate]

Your situation is very similiar to my own. I was having much of the same symptoms, went thru tons of tests, etc. I went off glutens for 3 weeks, and at this point it was not real clean.....I basically stopped eating bread and past just to see if this was my problem and just that much I realized it was the issues. I still had the blurred vision, the off-balance, speech issues, terrible memory, etc. Realizing this was at least part of my problem I really tightened up my diet, read packages and avoided all glutens. It took over a month on a very strict diet for my balance to come back. Then I got hit again and I knew my diet was good....realized then I had an intolerance to high fructose which caused me the same dizzy and foggy thought processes.

I was still having symptoms and docs wanted to send me to another specilaist and had to have a copy of my blood work.......oh, talk about make me sick! Doc, who actually told me I DID NOT have anemia (something I have had all my adult life) also did not tell me that I was vitamin deficient in many areas, not borderline.....I was below normal levels. So, unless you have seen the copy of the blood work be very careful in taking that all is good. You could be borderline in many areas and feeling the effects of vitamin deficiency. I looked all the medical coding up online. Started taking all the vitamins that I was defiecient in and slowly I started improving.

There are great sites online to find out symptoms from various vitamin defiencies. Balance could be from lack of vit D or anemia....I take 1000 IUs 2x daily. Sounds like you may have some neuropathy issues which zinc and vit B12 might be able to help....I take 30 mg zinc 2x daily. I also take a daily iron supplement, multi vitamin, calcium, vit E, magnesium. I was having hair loss which is a sign of loss of silicon. Another terrible symptom I had was flinches, muscle spasms and restless leg and found a diet rich in potassium foods helped.

I too am taking birth control and questioned that myself. For me, it was the glutens. Trying a very strict gluten free diet and getting all the vitamins I needed got me back on track.

AVR- Thanks for all of your suggestions and insights. Because I take a PPI I do take only 1000 I.U. of vitamin D3. I could try taking it twice daily like you do. I have always thought I was low in B-12 too, again especially because of the PPI. My question about the B vitamins is that I read that if you only take one kind of B vitamin it will cause your others to be off balance. How should I take a B-12 supplement? By itself? In a complex? I bought a Super B Complex 50 mg from GNC and will start taking that. It is 50 mg of every B vitamin. Is that enough or too much? Should I take more of the B-12 on top of that? I never thought of zinc being an issue. I am thinking of taking magnesium again because of the PPI.

I too have a sensitivity to fructose. I cut out ALL high fructose corn syrup from all my foods a few years ago. I thought that was enough but then I noticed issues after eating bananas and apples. I stopped eating them and stick to berries now.

I will continue on the Gluten free diet and start taking these vitamins you suggested. I am glad you have found relief from your symptoms.

I am so glad you offered this information to me. I am at a loss and feel hopeless that I will never get better. It is good to know others have gone through this and found relief. I can't express enough how grateful I am to get your advice and help. Thank you.