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Elaine40

For Those Who Didn't Have Awful Stomach Problems

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I've always had stomach issues but it wasn't always an issue for me, sometimes just a lot worse than others and other times my stomach was doing pretty well. However, I have been afflicted with a bunch of neuro stuff.

Now my DD who doesn't really have any stomach problems is in the process of being tested for celiac based on a resistance to absorbing iron (they think she either has a malabsorption problem like celiac or is bleeding in her gastrointestinal tract).

Are there a lot of you out there whose stomach problems were lower on the list of major issues?

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Are there a lot of you out there whose stomach problems were lower on the list of major issues?

Well, I guess I can't quite answer whether there are a lot of us, but there's more than a few.

The typical GI symptoms listed on all the mainstream medical sites were certainly present, but maybe only the massive 2ton nausea cracks the top10 worst symptoms. (The worst flu nausea I've ever had would weigh in ~400lbs)

In relation to the what I *think* is the question - the GI symptoms came on strong before the rest, for me. And kept getting worse as entire new families of symptoms got in the act.

So, in my case, I don't I could've had the symptoms w/out all the GI stuff leading it off.

I can probably list most of them if that's what you're looking for.

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I've always had stomach issues but it wasn't always an issue for me, sometimes just a lot worse than others and other times my stomach was doing pretty well. However, I have been afflicted with a bunch of neuro stuff.

Now my DD who doesn't really have any stomach problems is in the process of being tested for celiac based on a resistance to absorbing iron (they think she either has a malabsorption problem like celiac or is bleeding in her gastrointestinal tract).

Are there a lot of you out there whose stomach problems were lower on the list of major issues?

I also had stomach problems on and off. I actually went to the doctor about them a year and 1/2 ago and he told me it was related to ovulation. So I figured all my stomach cramping feelings were related to my menstrual cycle in some way and ignored them. If you asked me if I had stomach problems before I got diagnosed with celiac, I would have said NO. I didn't have diarhhea hardly ever and when I did I always thought it was related to some food I ate that caused it. Like bad chicken, or meat. I did have constipation though, even though I would go everyday (if that makes sense). But I also wouldn't have thought that was a problem because I did go to the bathroom everyday.

What caused them to find the celiac was because I had ovarian cysts and one burst. My stomach pain from celiac must have kicked in double time after that and I kept going back to the doctor for it. Finally they asked about family history and when I told them my sister had celiac, I was tested. Otherwise, I would never have been diagnosed. That was the only major symptom I had and it only happened this past May.

But for many years I've had brain fog, tingly hands and feet, dark circles under my eyes, joint aches, insomnia, fatigue, depression, (not diagnosed, just know I'm prone to it) and a general feeling that something was wrong. I always figured these symptoms were separate and not related to any one problem so I never sought help for them. I don't think the symptoms are always obvious or specific.

Not sure if that's what you were looking for, but hopefully it helped.

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I've always had stomach issues but it wasn't always an issue for me, sometimes just a lot worse than others and other times my stomach was doing pretty well. However, I have been afflicted with a bunch of neuro stuff.

Now my DD who doesn't really have any stomach problems is in the process of being tested for celiac based on a resistance to absorbing iron (they think she either has a malabsorption problem like celiac or is bleeding in her gastrointestinal tract).

Are there a lot of you out there whose stomach problems were lower on the list of major issues?

My abdominal symptoms were of such a changing nature I didn't know how to explain them so I just tried self diagnosis most of the time. I had occasional diarrhea, occasional constipation, ocasional bloating, rare cramping-like pain in the left side but always felt tired with no energy. I had major eye surgery in June of 06 and explained my lack of energy on being forced into

"doing virtually nothing" because of the surgery and then followup surgery for retinal detachment. I also thought that may have been the cause of a 20 pound weight gain in a year. My doctor started me on Prilosec to try.

Early this year I started having a very itchy rash on my elbows and knees. Out of frustration I googled"dermatitis knees and elbows". What followed was as if someone had entered my body and printed out much better than I could the bizarre symptoms I had been having. It read something like, "dermatitis herpetiformis - may also have symptoms of d, c, bloating, -----etc." It also showed a picture of a rash excatly like what I had develop for many years on my butt, maybe 2-3 times a year. It would start on one day, itch like crazy for that day and gone in 3-4 days. I diagnosed and treated this as ringworm and had told my primary care about it but she had never seen in.

After my internet googling, I asked my primary care to blood test for celiac. She was somewhat reluctant because of my age (68) and size (overweight) but she did and called me two weeks later with her "shocking" news. Bottom line I have been gluten free since 4/25/07 and all abdominal symptoms are gone. I am now working on the lack of energy.

Sorry this is so long, I didn't know what to leave out. Geeze

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I have a history like your daughter's--no symptoms before diagnosis; no GI stuff, no energy-level stuff, no neuro stuff (I am genetically, I suspect, a little nuts!) :D All I had was low iron, and incredibly enough I was tested for celiac right away by my extraordinary GP.

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I've always had stomach issues but it wasn't always an issue for me, sometimes just a lot worse than others and other times my stomach was doing pretty well. However, I have been afflicted with a bunch of neuro stuff.

Now my DD who doesn't really have any stomach problems is in the process of being tested for celiac based on a resistance to absorbing iron (they think she either has a malabsorption problem like celiac or is bleeding in her gastrointestinal tract).

Are there a lot of you out there whose stomach problems were lower on the list of major issues?

For my hubby his health started to decline with joint pains (dx as Psoriatic Arthritis) and fatigue.(sleeping 20 hrs +!)

He did used to complain of a 'burning ' stomach but it wasn't his worst symptom by any means.'D' was never a problem.

He had anemia for many years.

By the time of his dx of celiac disease neuro symptoms had also kicked in (burning feet, staggering gait, clumsiness)

In my son he's always had loose stools (it tended to wax and wane) but he NEVER complained of stomache ache and was tested because of his Dads dx.

His only symptom that he complained of was 'bone ache'.- no anemia.

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Thanks so much. The more and more I think about it, I think that I just lived with stomach aches for so long that it just didn't phase me as being abnormal. I had diarrhea probably several times a week but for the most part it wasn't unmanageable, but my stomach did burn a lot. I almost forgot about it now that I haven't had gluten in so long.

My daughter will be tested this week for celiac so I pray they figure out whether it is or not.

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I think a lot of us just deal with things that way. We learn to live with the little problems instead of realizing they are part of one big problem.

I will pray that your daughter has a positive outcome. Is she getting the blood tests?

I have 2 children that will need to be tested, ages 7 and 9. Not looking forward to having it done, but know in the long run it's better to know for sure.

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Hi,

For me, I never had any GI symptoms so my diagnosis took many years. I suffered with EXTREME fatique. If I was offered anything at all or sleep, I would choose sleep every time. I could sleep all day if I had the chance. I also had severe bone pain, joint pain, arthritis, dizziness, flu-like chills and night sweats, canker sores all over the inside of my mouth, a constant craving for salt, depression and anxiety...I know there were more symptoms but after 5 months I can hardly remember some of what I was feeling because I am doing so much better. I just wanted to ask if anyone after being diagnosed experienced an increase in their blood pressure or weird heart palpitations. Lately I feel like I can physically feel my heart beating in my chest with such pressure that it scares me. My blood counts such as white blood cells and platelets have always been low but were tested to be even lower after going gluten-free. Does anyone know of a connection between the heart/blood counts/blood pressure and celiac?

Thanks,

mm&j (Susie)

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I just wanted to ask if anyone after being diagnosed experienced an increase in their blood pressure or weird heart palpitations. Lately I feel like I can physically feel my heart beating in my chest with such pressure that it scares me. My blood counts such as white blood cells and platelets have always been low but were tested to be even lower after going gluten-free. Does anyone know of a connection between the heart/blood counts/blood pressure and celiac?

Thanks,

mm&j (Susie)

Hi Susie,

One of my main neurologic problems was weird heart palpitations and increased heart rate due to actually a too low blood pressure most of the time but sometimes it is on the high side especially when I'm tachycardic. They say it is neurologic-based because BP is controlled from the back of the brain. I always have an increase in weird heart symptoms when I am ovulating and premenstrual (so basically half the month IF I get a normal period).

I do take a beta blocker which slows the HR down as well as anxiety medications (not SSRI). Relaxation techniques help, as well. Not saying that this is caused by anxiety but getting wigged out about it doesn't help me when it happens.

I am just learning more about the heart/blood count/celiac connection now. Do you have a good hematologist and celiac doctor? I know with my DD, she has a low white count as well as anemia and the doctor always checks BP and HR because high HR is a side effect of low blood counts.

Hope this helps.

Love,

Elaine

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Hi,

For me, I never had any GI symptoms so my diagnosis took many years. I suffered with EXTREME fatique. If I was offered anything at all or sleep, I would choose sleep every time. I could sleep all day if I had the chance. I also had severe bone pain, joint pain, arthritis, dizziness, flu-like chills and night sweats, canker sores all over the inside of my mouth, a constant craving for salt, depression and anxiety...I know there were more symptoms but after 5 months I can hardly remember some of what I was feeling because I am doing so much better. I just wanted to ask if anyone after being diagnosed experienced an increase in their blood pressure or weird heart palpitations. Lately I feel like I can physically feel my heart beating in my chest with such pressure that it scares me. My blood counts such as white blood cells and platelets have always been low but were tested to be even lower after going gluten-free. Does anyone know of a connection between the heart/blood counts/blood pressure and celiac?

Thanks,

mm&j (Susie)

Low platelets have been picked up for my hubby in the last year (he's been gluten-free 3 yrs) - he's under a haemotoligist who's monitoring it.

They tend to go up and down of their own accord (are still low now but not dangerously so)

No idea if it's connected to celiac disease though :blink:

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My BP is high at the doctor's office--although it is within the normal range when I check it at home.

I've had on and off heart palpations since being diagnosed--they're worse when I get CC'd. I was getting increasingly concerned about it, so I had an stress-echocardiogram last month on the advice of my doctor. The results were negative, the cardiologist feels it could be related to my anxiety. (the anxiety is definately Celiac related)

I do take one BP med right now. The cardiologist told me that "white coat hypertension" was still hypertension. I should have questioned him further on that, but I was quite out of breath from my stress test.

My blood work (counts) were all normal, also.

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Thanks Elaine for your response. I just logged on after a few days and noticed yours and other replies to some of my questions. I appreciate the information and insight on the heart beat/palpatations and blood pressure. I will check with my doctor as I have an appointment tomorrow.

Thanks again.

mm&j (Susie)

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