Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

So Frustrating Cant Do This Anymore

barbara123

By barbara123
in Doctors

Recommended Posts

barbara123 Apprentice
barbara123
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


jerseyangel Proficient
jerseyangel
Posted

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
Guest Doll
Posted
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 Apprentice
barbara123
Posted
  • Author

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 Rookie
gfpaperdoll
Posted

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

  • 2 weeks later...
Centa Newbie
Centa
Posted
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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,979
    • Most Online (within 30 mins)
      7,748
    volivier
    Newest Member
    volivier
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Outgrow celiac?

      By trents · Posted

      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked pointed out, absence of symptoms is not always a reliable indicator that no damage is being done to the body. I was one of those "silent" celiacs with no symptoms, or at least very minor symptoms, whose body was being slowly damaged for many years before the damage became pronounced enough to warrant investigation, leading to a diagnosis. By that time I had suffered significant bone demineralization and now I suffer with back and neck problems. Please, if you choose to continue consuming gluten, which I do not recommend, at least get tested regularly so that you won't get caught in the silent celiac trap down the road like I did. You really do not outgrow celiac disease. It is baked into the genes. Once the genes get triggered, as far as we know, they are turned on for good. Social rejection is something most celiacs struggle with. Being compliant with the gluten free diet places restrictions on what we can eat and where we can eat. Our friends usually try to work with us at first but then it gets to be a drag and we begin to get left out. We often lose some friends in the process but we also find out who really are our true friends. I think the hardest hits come at those times when friends spontaneously say, "Hey, let's go get some burgers and fries" and you know you can't safely do that. One way to cope in these situations is to have some ready made gluten-free meals packed in the fridge that you can take with you on the spot and still join them but eat safely. Most "real" friends will get used to this and so will you. Perhaps this little video will be helpful to you.  
    • Wheatwacked
      Outgrow celiac?

      By Wheatwacked · Posted

      @Riley., Welcome to the forum.   It was once believed that Celiac Disease was only a childhood disease and it can be outgrown.  That was before 1951, before gluten was discovered to be cause of Celiac Disease, also called Infantilism.  Back then Cileac Disease was thought to be only a gastro intestinal disease, once you  "outgrew" the colicky phase, you were cured. You were so lucky to be diagnosed at 5 years old so your developing years were normal.  Gluten can affect multiple systems.  The nervous system, your intellegence. The muscules, skeleton. It can cause neurological issues like brain fog, anxiety, and peripheral neuropathy.  It can cause joint pain, muscle weakness, and skin rashes. Epilepsy is 1.8 times more prevalent in patients with celiac disease, compared to the general population. Because through malabsorption and food avoidances, it causes vitamin D and numerouus other essential nutrient deficiencies, it allows allergies, infections, poor growth, stuffy sinuses and eustacian tubes. There is even a catagory of celiac disease called "Silent Celiac".  Any symptoms are explained away as this, that or the other thing. Gluten is one of the most addictive substances we consume.  Activating the Opiod receptors in our cells, it can numb us to the damage that it, and other foods are causing.  It has become socially acceptable to eat foods that make us feel sick.  "There's a pill for that".   It is generally accepted that n fact you are weird if you don't. The hardest part is that if you don't eat gluten you will feel great and think why not.  But slowly it will effect you, you'll be diagnosed with real diseases that you don't have. You'll be more susseptable to other autoimmune diseases.  As you read through the posts here, notice how many are finally dianosed, after years of suffering at older ages.  Is it worth it? I think not. Perhaps this book will help:  Here is a list of possible symptoms:   
    • Riley.
      Outgrow celiac?

      By Riley. · Posted

      Hi! Im Riley, 18 years old and have been diagnosed for 13 years.. the testing started bc I stopped growing and didn’t gain any weight and was really small and thin for my age.  I got diagnosed when I was 5 and have been living gluten free since, in elementary and middle school it was hard for me and I kept contaminating myself bc I wanted to fit in with my friends so so badly. I ate gluten secretly at school and mostly regretted it 30 minutes later.  I’ve had symptoms like diarrhea, nausea, headaches, stomachaches, threw up a lot and was really emotional.  In 2022 I really started working on myself and tried to stay gluten free and if I did eat gluten I wouldn’t tell anyone and suffer in silence.  Last year in July I begged my mom to let me „cheat“ one day bc I just wanted to fit in… I ate a lot of different stuff, all the stuff I missed out on in my childhood like nuggets, pizza and all that.. I didn’t have symptoms that day and was doing really fine My mom and I wanted to test how far we can go and said we would test it for 12 weeks to get my blood taken after to see if I’m doing good or if symptoms start showing  As a now 18 year old girl who finally gained a normal weight and doesn’t get symptoms I’m to scared to get tested/my blood taken cuz I finally found comfort in food and it got so much easier for me and my family.  A year and 4 months later i still didn’t get any symptoms and have been eating gluten daily.  I’m scared to get tested/my blood taken cuz what if I’m actually not fine and have to go back to eating gluten free. Any tips to get over that fear and „suck it up“ cuz I know I could seriously damage my body… sorry if I seem like a idiot here… just don’t really know what to do :,)
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
    • tiffanygosci
      Aldi Pueblo Lindo Yellow Corn Tortillas

      By tiffanygosci · Posted

      Another annoying thing about trying to figure this Celiac life out is reading all of the labels and considering every choice. I shop at Aldi every week and have been for years. I was just officially diagnosed Celiac a couple weeks ago this October after my endoscopy. I've been encouraged by my local Aldi in that they have a lot of gluten free products and clearly labeled foods. I usually buy Milagro corn tortillas because they are cheap and are certified. However, I bought a package of Aldi's Pueblo Lindo Yellow Corn Tortillas without looking too closely (I was assuming they were fine... assuming never gets us anywhere good lol) it doesn't list any wheat products and doesn't say it was processed in a facility with wheat. It has a label that it's lactose free (hello, what?? When has dairy ever been in a tortilla?) Just, ugh. If they can add that label then why can't they just say something is gluten free or not? I did eat some of the tortillas and didn't notice any symptoms but I'm just not sure if it's safe. So I'll probably have to let my family eat them and stick with Milagro. There is way too much uncertainty with this but I guess you just have to stick with the clearly labeled products? I am still learning!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.