Now What?

[hannahsue01]

Well I just got the call back from my blood tests and they said that they were negative. I have a strong family history of the disease. I was so sure that this was the problem. I have had symptoms basicly my whole life. The test was done at a small town hospital in Iowa. I donno what to do now.......this is extreamly depressing and now I find myself crying. Maybe I am crazy I donno......I actually was hoping for a positive result so that I could start feeling better.

[frenchiemama]

Just try the diet for a while. If you feel better, that's all the answer you need.

[mommida]

Like Carolyn posted, just try the diet. If you have a positive response to the diet that proves you have some type of gluten intolerance. My test results came back negative, but I improved dramatically on the diet.

L.

[lonewolf]

I agree with the others. A negative test doesn't mean you don't have a problem with gluten. My gene test came back negative for the main Celiac genes and my doctor told met that I couldn't possibly have Celiac. I had already been gluten-free and I knew it made me feel a lot better, so I had to decide that how I felt gluten-free was more important than a diagnosis. There are LOTS of people who have problems with gluten that aren't "techinically" Celiac.

Try the diet. There's a good chance that you can start feeling better. You don't need a doctor's permission.

[Guest ~jules~]

Was it just bloodwork? I was told by my gastroenterologist (who has several sprue patients) that sometimes it doesn't even show in bloodwork alone. Try the diet, see how you feel, if you feel better stay on it, good luck to you....Have you tried this enterolab people have used around here?

[RiceGuy]

From the many posts on this board, it seems most people are getting false negatives, even though the diet works for them. I could care less what any test says. I suffered since early childhood, and was never properly diagnosed. Dietary changes have worked wonders for me. IMHO ignore the test and try the diet if you haven't done so already.

Here's another way to look at it: If you go to the doctor because your arm hurts, and he says it doesn't, would you believe that? If you have a rash that is plainly visible, but the doctor says there's nothing there, would you believe that?

[jerseyangel]

I have to agree with everyone--try the diet 100%.

Even my GI told me that many Celiacs come in there with negative biopsies. The blood tests aren't perfect, either. The best indicator is how you feel.

[hannahsue01]

Thank you everybody. I think I may see what the diet does.

[Nantzie]

Yep. Try the diet.

I had negative blood tests and negative biopsy. The only "test" that was positive was the diet.

[danikali]

Thank you everybody. I think I may see what the diet does.

The blood tests aren't always accurate. I got negative blood tests and a positive biopsy.... ......do the diet (to a T) and see how you feel. Doctor's tests for celiac disease or gluten problems aren't always the best measure.

[rez]

The blood tests aren't always accurate. I got negative blood tests and a positive biopsy.... ......do the diet (to a T) and see how you feel. Doctor's tests for celiac disease or gluten problems aren't always the best measure.

Where do you live in Iowa? I live in Iowa as well and am looking for a good GI. Does anyone know of a good GI or doctor that knows about Celiac in kids in Iowa? Thanks

[evie]

Where do you live in Iowa? I live in Iowa as well and am looking for a good GI. Does anyone know of a good GI or doctor that knows about Celiac in kids in Iowa? Thanks

Rez..if you live anywhere near Ia city see Dr. Elliot at the univesity. He is GI specialist I have seen since late march '06, he and the dietitician have helped me there. Other Dr's who work with him say he is very well known country wide. Have also learned so much from all the people here on this forum. they have such good answers to the numerous questions you do not think to ask your Dr. or maybe he does not know answers to. there are a few other people on the list from Iowa on the thread here for people from various states.

Wish you best of luck with finding the answers. Just know from experience if we do not stay strictly away from gluten there will be problems, no fudging!! evie

[hannahsue01]

Where do you live in Iowa? I live in Iowa as well and am looking for a good GI. Does anyone know of a good GI or doctor that knows about Celiac in kids in Iowa? Thanks

I live in Wheatland Iowa wich is near both cedar rapids and the quad cities (eastern iowa). I only know of one reliable doctor in Iowa and he is in Anamosa.

[frenchiemama]

I live in Wheatland Iowa wich is near both cedar rapids and the quad cities (eastern iowa). I only know of one reliable doctor in Iowa and he is in Anamosa.

You live in a place called Wheatland? Wheat-land? OMG, move!

That is hilarious.

[hannahsue01]

You live in a place called Wheatland? Wheat-land? OMG, move!

That is hilarious.

LOL.....thanks I needed a good laugh today! Never thought about that......luckily as far as I know we grow no wheat....I hope! It's corn and beans around hear. Of course I am allergic to the corn pollen.....geesh.

[hannahsue01]

I've now thought about this overnight and discussed it briefly with my husband. The diet sounds like a good idea but I am worried that if there really is a problem with celiac that I would continue doing damage becaue I would be tempted not to follow the diet near as stricktly as I would with an official diagnoses. I already said well I won't bother with getting new pans or anything else. We have thought about a biobsy but donno if I should go through all of that just to find out that it ends up being negative as well. My husband was almost hoping that the results would come back positive as he was just coming to terms with all of this and wants me to get better. I now am finding myself being depressed because this all seemed to make sense before I got the results back and now I am confused and upset that I havn't found any answears. Maybe my last doctor was right and all I need is a psycholgist. But then there are a huge list of symptoms wich just about everyone of them from IBS (diagnosed 10 yrs ago) to having hands and feet going numb for the last 2 years. I donno if anyone would have any idea what else could be wrong with me? I am desperate for some answears......I can't stand feeling like this everyday for the rest of my life.

Symptoms

Constipation

Passed out a few times from passing poop along with severe sweating, extremely hot, very dizzy and nauseous

Diarrhea (especially after eating pizza, pasta, and ice cream with wheat flour in it)

Fatty stools (foamy, floating, floating fat)

Almost always nauseous

Upset stomach (often severe)

Bouts of heart burn (occasionally and always when I drink alcohol coolers)

Stomach cramps (sometimes severe)

Stomach is often more upset after having a bowel movement

Gas (sometimes severe)

Bloating

Bouts of chest pain

Chest tremors

Often very cold when no one else is (hands feet and nose cold to touch…..often to the point of shivering)

Night sweats

Boils on armpits (recurrent with treatment)

Arms have weird ache and numb and swell up and is very warm to the touch….(nurse told me to take aspirin and it seems to help)

Panic attacks (breath taken away and heart seems to skip beats lasts about 30-60sec and comes on with no warning)

Shortness of breath even while doing nothing sometimes severe

Short stature

Weight gain (120 to 205)

Can’t lose weight with diet and exercise (only time I have lost weight is when I didn’t eat at all for 4 months)

Light headed quite a bit

Periods of vertigo

Periods of clumsiness in arms and hands

Things said come out wrong (words come out switched around allot)

Tingling in face (pins and needles)

Weird vision (things look bigger than they are and sort distorted….really weird)

Occasionly find that I have been staring and can’t remember what has happened for awhile

Always hungry

Bad teeth (lots of cavities but have good dental hydene)

Bone pain

Joint pain and stiffness

Wrists have shooting pain off and on (left is worse)

Elbows get tennis elbow symptoms (comes and goes)

Muscle aches and stiffness (always feel like I have the flu)

Muscle weakness (weaker now than I was even a year ago)

Charley horses in feet and lower legs every day and night

Restless legs (feels weird and feel like I need to move them)

Really stiff after rest and sleep

Really sore after any amount of activity

Limbs often feel heavy (usually at the same time as being dizzy feeling like I need to eat)

Always tired

No sex drive

Trouble going to sleep

Trouble staying asleep

Wake up during night with severe lower back pain

Wake up to pee 2 or 3 times a night

Dry mouth and throat at night

Frequent urge to pee (often only pee just a little bit)

Irregular long heavy periods (used to make me throw up and curl up in a ball in pain)

Irritable and moody

Irritable and very agitated for no reason with feeling of restlessness (drives me nuts)

Sores on inside of mouth and on tongue

Diabetes (? hematologist told me to get further testing)

Low iron (not high enough to donate blood/dips in finger nails)

Extremely itchy bumps under chin with clear liquid in them (comes and goes)

White specks in nails (sometimes)

Abnormal skin sensations (feels raw when touched with no explanation…..usually on arms, back, or rib cage)

Headaches everyday (sometimes severe)

Migraines

Tingling and numbness in hands and feet

Throat often sore and swollen

Burning in throat after eating (not always)

Lower back ache for 6 months

Itchy skin

Hair loss (last 6 months or so)

Trouble concentrating

Fogginess (have to ask people what they said or can’t remember what they just said)

Get floaters about 3 or 4 times a month

Eyes get foggy (comes and goes)

Lactose intolerant (maybe)

Had premature birth at 29 weeks

Failed to produce more than 2 oz (usually less than 1/2oz) each pumping of breast milk for 4 mo period pumping 40 mins every 1 1/2 hrs

Everytime I have a blood test it comes back with a really high white blood cell count

Tried diet for 36 hours. Stomach felt better…poop got a little better. As soon as I ate wheat (pizza) again I felt like throwing up within 20-25 minutes. Poop returned to diarrhea.

[honeybuzzed]

I am also 24. Your symptoms are very similar to mine ,with the exception of like 4-5. The relationship part of it is similar as well. Although my husband is "saying " he is willing to have a gluten free kitchen he dose otherwise, which is sooooo frustrating. We are having a hard time at the moment as well and a lot has to do with the illness. I think our husbands should joining a club or something the bad attitude club lol.

It took me being sick in the hospital for 5 days starting on our wedding night for my husband to figure out that maybe I wasn't being dramatic. I had been in the hospital for a day or overnight off and on , but I guess my family and my husband couldn't ignore that long of a stay. FINALLY somebody thought to give me a biopsy! I choose not to have any sedative I wanted out of the hospital so badly ( I didn't want to wait for it to wear off and I knew the specialist doing the biopsy could sign me out ) It wasn't painful for me ... just uncomfortable. I ended up being seriously seriously sick for a total of 1 1/2 months. I was also unexplainably ill for most of my life. I also have elevated white blood cells.

Even though we have the kitchen arguments and he accuses me of being lazy ( even though I am usually an over achiever ) The part of the relationship regarding gluten has gotten better ... it has taken a lot of very baby steps to do it ... and the dreaded *gasp* conversation ( I think he would rather tar and feather himself then work out a problem ) Well errrr we will say that is still a work in progress

[Guest nini]

hon, your symptoms sound so much like mine... I agree it can be difficult to stick to the diet without an official dx, I tried it before my official dx and while it did help, I let my ob/gyn talk me out of it by him saying it was all in my head and bad for my baby (I was pg at the time). It took another 3 years of me getting exceptionally ill and almost dying before I got my dx. I wish I had trusted myself enough to stick with the diet the first time around.

Try enterolab if you need something official, but you do already have a positive dietary response which is more accurate than most testing right now. My daughters testing was negative, but she def. responded well to the diet and responds very badly when glutened.

[RiceGuy]

Well, quite honestly your symptoms look a lot to me like a vitamin B12 deficiency. Since you can take B12 without any doctor, and it's really cheap, I'd suggest trying it. As I see it, there's nothing to lose and very much to gain. While it's not a cure-all, it can go a long way. Many Celiacs have been found to be deficient in it, even if the blood level tests ok.

There are a few recent threads on it, in which I give a number of details from the research I've been doing lately. Here's one post with links to the kind that is supposed to be best, which is a sublingual methylcobalamin type:

Open Original Shared Link

The entire thread might be a good read too, as the title may apply to your case.

Hope you find your answers soon!