So Frustrating Cant Do This Anymore

[barbara123]

Ok long time since i have posted, I have been really sick with celiac disease and on the diet for over 3 months, last week i finally got to see my new gastro (waited 4 months for this appt.) office visit goes something like this..

looks like you have been diagnosed with celiac, yes been on gluten-free diet for over 3 months, I want to do a level on you since your diagnoses, I asked for a gene test because my granddaughter has had constipation since she started eating any food. Doc says I dont really believe in the gene test. Said he wanted me to have another test (wouldnt even tell me what it was except testing my levels. Out the door i go. 1 week later still have not recieved my results. Call office for results, secretary calls me back (after 2 more days) says dr says my tests were neg, what test neg? she didnt know But the dr. is concerned about my IgG being deficient and wants me to go to the hospital ASAP and have more lab work done, I ask what for she says she dont know but asked for phone # of hospital in my town to do additional testing I go up there all he does is IgGab and IgG

whats up with this?

I am so upset with this dr. I waited 4 months to see him and then had my dh take a day off work to drive me 200 miles one way to see him. Secretary said he wants to wait until my new tests results come back and then he will talk to me and try not to worry I am in good hands.

At this point I do not feel like I am in good hands. I am scared, sick, tired, and tired of living.

[jerseyangel]

Hi Barbara,

I'm sorry you're so upset, and I don't balme you for being frustrated with your doctor.

The "levels" he tested for are antibodies. They are done periodically to make sure that no gluten is slipping by into your system. If they are "negative", that means you are doing a good job of being gluten-free

Please don't give up--it will get easier and you will get to feeling better. I remember that I didn't begin to "turn a corner" until about 4 months into the diet. It was 18 months-2 years before I began to feel good most of the time.

Have you tried eliminating dairy? When we're first diagnosed, we can be temporarily lactose intollerant--the tips of the villi that excrete the lactase may be still damaged.

Sometimes, we can become aware of other food sensitivites after we get rid of the gluten. This happened to me, and once I figured out which foods I was intolerant to and stopped them, there was considerable improvement.

Some common things to suspect are soy, corn and legumes. I would also go easy on the grains at this point.

I don't know what you're eating/not eating at this point, but I would suggest sticking with meats, potatoes, white rice, veggies (except legumes) and fruits (except citrus). Use olive oil and drink a lot of pure water. Try, if you haven't already, not using the gluten-free processed foods and stay with the whole, naturally gluten-free choices. Just until you get to a point where you feel better.

Is your kitchen completely safe--with a separate toaster, collander and wooden utensils and boards? Are all of your meds and suppliments gluten-free--and your personal care products?

Anything you're not sure of, we can help you with.

Do you use a probiotic? I find that I can't tolerate them still. Some here get good results with viatmins like B12--personally, I did better after I stopped taking suppliments. I do take Caltrate with meals, and that has helped a lot with the D and lower abdominal discomfort.

I can sense the sadness in your post. I felt that way, too, at the beginning. I don't know how old you are, but I was 49 when diagnosed--after being sick for close to 20 years and I think that those of us diagnosed past 30 have a more difficult time in general. It took a long time to get this sick and the damage takes a while to heal.

Please feel free to PM me anytime, and hang in there--there is light at the end of this tunnel

I'm editing to add that I had the gene test done through Enterolab because I was curious, and I also wanted to know for my 2 sons exactly which ones I had. My gastro doesn't put much stock in them, either, but I'm glad I had mine done.

[Guest Doll]

Ok long time since i have posted, I have been really sick with celiac disease and on the diet for over 3 months, last week i finally got to see my new gastro (waited 4 months for this appt.) office visit goes something like this..

looks like you have been diagnosed with celiac, yes been on gluten-free diet for over 3 months, I want to do a level on you since your diagnoses, I asked for a gene test because my granddaughter has had constipation since she started eating any food. Doc says I dont really believe in the gene test. Said he wanted me to have another test (wouldnt even tell me what it was except testing my levels. Out the door i go. 1 week later still have not recieved my results. Call office for results, secretary calls me back (after 2 more days) says dr says my tests were neg, what test neg? she didnt know But the dr. is concerned about my IgG being deficient and wants me to go to the hospital ASAP and have more lab work done, I ask what for she says she dont know but asked for phone # of hospital in my town to do additional testing I go up there all he does is IgGab and IgG

whats up with this?

I am so upset with this dr. I waited 4 months to see him and then had my dh take a day off work to drive me 200 miles one way to see him. Secretary said he wants to wait until my new tests results come back and then he will talk to me and try not to worry I am in good hands.

At this point I do not feel like I am in good hands. I am scared, sick, tired, and tired of living.

It *sounds* like your doctor may be checking for what is called "Refractory" Celiac, or Celiac Disease that does not improve on the gluten-free diet. In some cases, antibody levels are negative even though damage can still be detected on biopsy. I think he is trying to rule out an IgG deficiency just in case you *are* somehow still getting gluten in your system, but his testing methods are not able to detect it using traditional means. If he is a good doc, he will try and attack the problem from all sides. He may do another biopsy in awhile to see if *any* improvement has occurred.

Usually *IgA* deficiency is seen more often in Celiacs. If you have an IgG deficiency, you will be more likely to get sick. Do you often suffer from infections a lot?

Either way, he may want to also test you for bowel infections and check for other possible reasons for why are are not healing.

Lastly, the reason why most doctors do not use the "gene test" is because it doesn't tell you anything. If you have the disease, then yes, most likely you have the genes commonly found in Celiac Disease. Knowing this would not really tell you much. These genes are passed on "randomly", so it doesn't mean all of your descendants will have the disease, and many people carry the genes but do NOT develop the disease. You need more than the genes for Celiac to develop it. If YOU have Celiac, your family members DO have a higher chance of getting it, but a gene test is really useless in this aspect, IMO. You already know that they are at increased risk, it would make more sense to have you GRANDAUGHTER tested for the gene(s) and Celiac if you are concerned.

I know what it feels like to feel like crap. But realize that you can't give up yet. Likely you will figure this out, it just takes time.

Your doctor may test you for antibodies to casein, soy, etc. or you can just cut them out on your own. There is some evidence to suggest that in *some* people, these proteins *may* also cause intestinal damage. Aside from that, many people with Celiac are simply intolerant to them.

I'm sure others here will give you some great advice (like JerseyAngel's post above )! Hang in there!

[barbara123]

Thank you both for your input. i really needed a little encouragement seems life is a little rough right now. I was feeling somewhat better just tired mostly, no energy, but now i seem to be going backwards.

I just turned 50 last week. I dont care about the 50 thing I just want to be healthy. Have enough energy to at least have some sort of life.

I dont feel like i can do anything anymore, I am so tired, achy, upset tummy, and a constant headache.

Will go to bed and try to wake up in the morning with a better attitude. Thanks again Barbara123

[gfpaperdoll]

Barbara, Make sure you take B12 everyday... it will help you a lot...

[Centa]

1 week later still have not recieved my results. Call office for results, secretary calls me back (after 2 more days) says dr says my tests were neg, what test neg? she didnt know But the dr. is concerned about my IgG being deficient and wants me to go to the hospital ASAP and have more lab work done, I ask what for she says she dont know but asked for phone # of hospital in my town to do additional testing I go up there all he does is IgGab and IgG

whats up with this?

I am so upset with this dr. I waited 4 months to see him and then had my dh take a day off work to drive me 200 miles one way to see him. Secretary said he wants to wait until my new tests results come back and then he will talk to me and try not to worry I am in good hands.

At this point I do not feel like I am in good hands. I am scared, sick, tired, and tired of living.

Hi, Barbara. I see that you're in Wyoming. Part of your worry is that people are referring to test results, but not talking to you about what's in them.

There's a law in the U.S. now, as far as I know, that says that patients can get copies of all their test results. I regularly get copies of my blood tests for my annual, my bone densities, and any extra tests.

There are two routes to getting them, and it depends on the policy in the doctor's office, in part but they will comply with the law if you push them.

1) Call medical records, not the doctor's office & see if they'll send you recent test results. In one circumstance it was easy as pie, they said oh, of course, and sent them.

2) In the circumstance of my primary physician, he has a policy of issuing the copies from his office, so I have to be sure to explicitly request that his nurse arrange to send me copies. Which I do, and they come.

Tell them that you keep a health file at home.

I don't know about you, but I'm 59 and I am OUT of patience with doctors who tell me that I won't understand something, or that I'm obsessing, or don't need to know something just to trust them. I'm out of patience with doctors who can't answer my factual questions, either.

Be polite but firm: you expect them to send you test results. You may have to figure out what system they use, but they ought to mail them.

All best...how upsetting this thing you're going through. I'll be thinking of you.

Centa