Confused And Disouraged!

[hannahsue01]

I got back my blood tests and most all seems fine they say. The celiac tests were neg and so were the thyroid ones. They said I have hi protien....what's that mean? And as usuall I have a high white cell count with no obvious explantations. For about 3 years I have had probably 50 blood tests with a high white cell count and antibiotics did very little for this. Now he wants to send me to a endocranologist (blood doc) and GI to get a scope. I have been to a blood doc before and got no where. 10 years ago I was seen by the univerity of Iowa as well as Mayo clinic with very little answears except the usual IBS bull ****!!! This doctor is a celiac himself and thought it was very likely that I had celiac but the results were neg. Is there any chance that I can still have celiac and not a positve blood test. I have a loooooooong list of symptoms with many going back over 10 years (especialy the bowel ones). I do have a family history of the disease. I was so sure that celiac is what my problem was and call me crazy but I guess I was hoping that this was my problem so that I could feel better. Now I am back to square one once again with really no answears and am finding myself depressed again. I am beginning to think that what my last doctor said is true.....basicly I am nuts and just need to see a psyciatrist. Does anyone know what is wrong with me? I can't stand feeling like this day after day. I can list my symptoms if anyone wants me to. Thanks for any help.

[HawkFire]

have you gone on the gluten free diet for a long period of time?

[CarlaB]

You could be gluten intolerant, which may not be picked up by celiac tests. All my celiac tests were negative, but my dietary response and Enterolab results were very positive!

[hannahsue01]

have you gone on the gluten free diet for a long period of time?

Back in June when my tummy was really bad....I felt like throwing up constantly and was having allot of direah (not usual for me....I go back and forth but have always mostly been constapated). I went gluten free eating chicken, rice, peas, celary, peanut butter, and raisons. I only did this for about 36 hours because I was informed not to go gluten free untill I had testing done. My tummy felt not 100% but allot better and my poop became more formed. I then ate pizza and felt like throwing up agian and was back to having diareah. For the last maybe two months I have been what the doctor called gluten light. I have only been eating two pieces of toast in the morning to keep gluten in my system. My tummy has felt better even doing this and if I eat allot of regular pasta or gluteny cereal my tummy seems to punish me! But then again I am beginning to think that maybe it's all in my head and maybe it's just me wanting to believe that it is working.

[nikki-uk]

My hubby was one of the small percentage of coeliacs that don't produce antibodies (neg bloods)

He doesn't have IgA deficiency either.

His biopsy was positive with villous atrophy-so it is possible

Hope you get some answers

[key]

This is interesting to me. My second son tested negative for celiac disease, but I have it and my youngest son also has it. My second son has very normal bowel movements other then not going sometimes for two days. When he does it isn't a consistency of constipation. He did drop down to the 10th percentile on his growth chart from 50th percentile in six months. He was also complaining of stomach aches and he is very gassy. The tests were negative completely. The doctor had no answer as to why he would be losing weight. He hasn't been scoped. Now I am wondering if he should be. It is all so frustrating when there is no easy answer.

If I were you I would just go gluten free for even six months and see if it works. You could have the biopsy first if you can get them to check for it.

I too felt like throwing up all the time. I never did, but felt like it. I still feel this way when I get gluttened.

I hope you find your answer. It is very frustrating to not know. I do think that Lexapro has helped me somewhat with getting my stomach straightened out. It would be worth a try if you are completely desperate. I have a hard time staying on anything though.

Goodluck.

Monica

[celiacgirls]

My daughter had negative blood tests several times over the years and I was told her tummy aches were due to anxiety. She responds positively to the gluten free diet and we have a history of biopsy-proven celiac in my family. She never had the endoscopy because my husband and I didn't want to put her through that when we think she needs to be gluten free anyway. My mom did have the biopsy and it was negative but she follows the gluten-free diet anyway because she feels better. I think, in my family, we either have or would get celiac if we ate it.

Since you had a positive response to the gluten-free diet, you could either continue eating gluten and get the biopsy and hope for a confirmed diagnosis or just do the diet now. Either way, since you felt better during the time you were gluten-free, you probably should go gluten-free after the biopsy.

You could also do the Enterolab testing. That is how we finally determined that gluten was really my daughter's problem.

[hannahsue01]

My hubby was one of the small percentage of coeliacs that don't produce antibodies (neg bloods)

He doesn't have IgA deficiency either.

His biopsy was positive with villous atrophy-so it is possible

Hope you get some answers

Really! I didn't even know that was possible. I have suspected a possible IgA deficiency but I don't think that would disterb the other tests done.

My daughter had negative blood tests several times over the years and I was told her tummy aches were due to anxiety. She responds positively to the gluten free diet and we have a history of biopsy-proven celiac in my family. She never had the endoscopy because my husband and I didn't want to put her through that when we think she needs to be gluten free anyway. My mom did have the biopsy and it was negative but she follows the gluten-free diet anyway because she feels better. I think, in my family, we either have or would get celiac if we ate it.

Since you had a positive response to the gluten-free diet, you could either continue eating gluten and get the biopsy and hope for a confirmed diagnosis or just do the diet now. Either way, since you felt better during the time you were gluten-free, you probably should go gluten-free after the biopsy.

You could also do the Enterolab testing. That is how we finally determined that gluten was really my daughter's problem.

The doctor wants me to have a biobsy. My husband just says go on the diet and so did my grandmother. I kinda want some concreat answears. I guess I donno whats best to do. Some of my family understands this disease because they have it but then there is the rest of the family that thinks I am compleatly whacko. My husbands mom was arguing with him just the other night we should not for any reason put our symptomatic daughter on a gluten free diet without doing a biobsy on her first....errr!!!

[elye]

As I've read many others say here, not only can there be false negatives with the blood panel, but the biopsy can also not show any damaged villi when, in fact, damage is there. You have about twenty-two feet of winding intestine for them to examine; a good GI will take many samples throughout it, but many only snip off one or two pieces that are not sections from a damaged area. So, even those results can only confirm the positive, I believe. The only true indicator of this illness, really, is positive dietary response.

[happygirl]

hannahsue,

have you been tested for eosinophillic disorders? I just learned about them (I have recurring issues beyond Celiac, long story) and am being tested for them. The reason that made me say this is that you said you have a high white blood cell count and I think that is related to it (but I am just learning). Either way, they are a family of diseases that cause bowel problems, among other things! They often affect children but are now being more and more diagnosed in adults......but overall, are HIGHLY underdiagnosed (sound like Celiac, huh?!) The disorders are related to FOOD and ENVIRONMENTAL allergens and other intolerances. Please, although I don't even know if I have it, please please please ask your doctor (who, of course, will know nothing about it, I'm sure) or find a doc who know something about it (very few, but I can try and help locate one, as I'm in the process right now...seeing a guy at Johns Hopkins).

Here is the organization (similar to GIG or CSA for these disorders) www.apfed.org. There is a wealth of information...

Also, I just found this article and it is a bit over my head in parts of it, but it is really helpful. I would highly recommend using this as a guide for navigating through your doctors because it is a journal article written by one of the top Eos. doctors (in Cincinnati). Open Original Shared Link

Please, PM me if you have any questions...I'm still in the process of learning but I have been through h$ll and back (as you have, and I feel so badly for you, dear!) One of the articles said that for some of these, it takes over 4 years to get a diagnosis.

I know this is kind of out there...but I'm in the process of searching and thought maybe this would help you.

Laura

[rez]

Does this doc not recognize gluten intolerance? Was he not supportive of you trying the diet anyway? I hope he was helpful to you in some way because we have an appointment with him tomorrow. I thought Celiac had to be pretty progressed for it to show up in the blood. Did you ask Dr. Vernon about Enterolab. It will be an interesting appointment tomorrow I think. Wish me luck. Hang in there and if you feel better on the diet, just go for it! I think once you go gluten free it's really quite easy. We went to Stahu's for pizza in Moline tonight and then to Dairy Queen for ice cream. Stashu's has the best gluten free pizza and calzones. They also make boli rolls. It is delicious and the owner is terrific. If you live anywhere near Moline, IL, check it out!! YUM!!!

[hannahsue01]

Does this doc not recognize gluten intolerance? Was he not supportive of you trying the diet anyway? I hope he was helpful to you in some way because we have an appointment with him tomorrow. I thought Celiac had to be pretty progressed for it to show up in the blood. Did you ask Dr. Vernon about Enterolab. It will be an interesting appointment tomorrow I think. Wish me luck. Hang in there and if you feel better on the diet, just go for it! I think once you go gluten free it's really quite easy. We went to Stahu's for pizza in Moline tonight and then to Dairy Queen for ice cream. Stashu's has the best gluten free pizza and calzones. They also make boli rolls. It is delicious and the owner is terrific. If you live anywhere near Moline, IL, check it out!! YUM!!!

I think Dr. Vernon is a great doctor and the most informed doctor I have yet to meet on the subject. He's also the first doctor out of about 15 docs over the years that didn't think I was either making things up or need to see a psyciatrist. He thinks it is celiac but also wants to know whats going on with the blood count and protien. He advised a scope to check for sure since I didn't have positive blood work and to rule anything else out. He did seem to think it was less likly that I had it if the blood results were negative but he wouldn't totally rule it out. I guess I was just expecting or more so hoping that they would be positve so I would have some answears. He is aware of my diet and the reactions I have had and the long list of symptoms. I am just so frustrated not getting any real answears even still at this point. I am now wondering what is the problem with the other part of my blood tests and questioning all of this. I never mentioned enterolab as I could never afford to even do that. I didn't know we had local gluten-free pizza made by somebody else around here.....sounds great. I think we may have to check it out....thanks. My husbands mom lives in Moline so we are over there every now and then. Where are they located?

[Guest nini]

I know entirely too many people that have had both negative blood tests and negative biopsies only to turn up with a very positive biopsy several years later after getting much much sicker.

Truthfully the only definitive proof that you have a problem with gluten is dietary response. How does your body respond to the diet? It really is that simple. You really don't need a Dr.s permission to go on the gluten-free diet and if you get better you have your answers. If you don't get better keep searching, but the gluten-free diet won't affect OTHER tests. It only affects tests looking for Celiac (BECAUSE if you are 100% gluten-free your body begins to heal itself).

With a strong family history and symptoms a mile long what have you got to lose by putting you and your daughter on the diet? I really don't understand the mentality of having to have permission from a Dr. to start this diet. It's quite common though, as a society we are taught to ignore our bodies signals and treat Dr.s like all knowing Gods. They are not.(Of course this is just my opinion)

[ArtGirl]

I am beginning to think that what my last doctor said is true.....basicly I am nuts and just need to see a psyciatrist.

YOU ARE NOT NUTS! I repeat.... YOU ARE NOT NUTS!!

Doctors are not all-knowing, and way too often when their not infallable tests come up negative, they want to say the patient's problems are all in their heads (especially female patients), rather than use their own heads and search for the answers. How in the world can your mind cause an elevated white blood count!!! Geesh.

Many of those on this forum do not have an official diagnosis - myself included. If the diet causes reduction of symptoms or even causes them to disappear, I'd say GO FOR IT! Be firm with family (although it seems your husband is supportive and that's a BIG ADVANTAGE). You don't have to have a diagnosis to tell them that you just feel better on the gluten-free diet and you'll stick with it.

You and your daughter could do this together as an experiment and be active in recording your improvements over a set time period (at least 3 months) - that is, if you're not going to do the biopsy on her (If it were my child, I'd do the Enterolab test first rather than a biopsy, but you have to do what you think is best for her, as well as yourself.)

I can't address your other issues, like the blood work, but I think the suggestions of eosinophillic disorders by Happygirl is interesting. There IS a cause for your symptoms. Again - it's NOT all in your head!!!

[darlindeb25]

Hannahsue--I agree with Nini. You have the family history, a doctor who seems to believe beyond a shadow of a doubt that you are gluten intolerant--will more test make that much of a difference? If you already tried gluten free for a short time and felt significantly better, then there is your answer. If only the US knew what celiac disease was when I was a child, I may have had wonderful memories of the last 30 yrs of my life, yet my memories include night after night of diarrhea, taking Paxil for chemical imbalances, missing trips because of my tummy, feeling like a freak at times because we didn't know what was wrong. My sister was put on a special vitamin syrup when she was a child because of vitamin deficiencies and she is a diagnosed celiac--5 yrs now, our father 2 yrs now and me for 5 yrs. When I was 24, if going gluten-free would have given me back my life, I would have done it in a minute, had I only known. When my intolerances are out of hand, I gain weight and I was very heavy when I went gluten-free--I lost over 4 sizes in clothing.

AND, Hannahsue--the #1 argument for going gluten free: What if the tests are false negatives and you are gluten intolerant--that gives you a 60% higher chance of stomach cancers????????? This fact is all it should take to change your mind! Deb

[hannahsue01]

Thanks guys! It nice to know that not everybody thinks I am nuts. I am lucky to have found this site and to have found a doctor who is educated and believes me. I have had what I believe is a positive diet response as explianed above. I think I am at least going to make sure nothing else is wrong.....I have suspected diabetes as well wich is very prevalent in our family on both my parents sides and I am over wieght wich puts me at risk as well....many of my sypmtoms also fall into this cat....but once again I have had conflicting doctors. One doc said my blood fasting sugar was fine and the blood specailist said that they checked my sugar with other tests and that it was high reagardless of wether I had eatin or not....of course this is the same doc who told me I may have bone cacer and then rulled that out. I have little idea what the high protien means. My celiac grandma mentioned that gluten is a protien....donno if that means anything. Does anyone know if it turns into a protien in your blood? I wish enterolab was an option for our daughter but it is way to high for our pocket book. I have been unable to work since our youngest daughter was born last December rather then in Febuaray like she should have. Because many of her docs do not want her in day care period not even at church because of her prematurity and she has cronic lung disease. My only option for day care is to put her in a special one where nurses are taking care of her and that is extreamly expensive. I do think what someone stated above about eosinophillic disorders is very interesting and I plan to mention this to my doctor. Thank you guys for all your help and support.

I know entirely too many people that have had both negative blood tests and negative biopsies only to turn up with a very positive biopsy several years later after getting much much sicker.

Truthfully the only definitive proof that you have a problem with gluten is dietary response. How does your body respond to the diet? It really is that simple. You really don't need a Dr.s permission to go on the gluten-free diet and if you get better you have your answers. If you don't get better keep searching, but the gluten-free diet won't affect OTHER tests. It only affects tests looking for Celiac (BECAUSE if you are 100% gluten-free your body begins to heal itself).

With a strong family history and symptoms a mile long what have you got to lose by putting you and your daughter on the diet? I really don't understand the mentality of having to have permission from a Dr. to start this diet. It's quite common though, as a society we are taught to ignore our bodies signals and treat Dr.s like all knowing Gods. They are not.(Of course this is just my opinion)

If we don't get an official diagnosis on our duaghter what do we do with the school. They don't want us bringing in her food and seem willing to have the nutritionist work with us. However, they wanted a detailed explanation in writing from her doctor to put her on anyhting other than regular milk and to explain what foods she could and could not have that contained milk. I don't think they will take my "mommy" excuse for this....especially being how difficult and crucial it is. I can get a biobsy if I really wanted for her but my doctor (the one who believes me not her GI) says just to put her on the diet when I go on it and see if it helps her....he said that was a good enough diagnoses on her for him since she is so young. He doens't think that the biobsy may even show anything on her untill she would be older. I would hope that he would write a scipt of some sort for her but not untill I go on the diet wich he doesn't want me to do untill I have a biobsy done. If I choose to do a biobsy how much gluten should I be eating to keep signifacant damage. I have only been eating a couple slices of toast in the morning and that is usually it.....I think that may have even screwed with my blood results. Can my stomach heel a little on a low gluten diet? Thanks.

[rez]

Hang in there! Go to Stashu's tonight and have a delicious gluten free pizza. YUM!! Go for the diet. It's delicious and nutritious! I have been following the diet with Thomas and my 14 years of GERD is gone. I feel better and our family is feeling healthy. Stashu's is off of John Deere Road. It's back behind where the furniture store Cohen's used to be. It's awesome pizza and the owner is super nice! Take care and I'll let you know how our appointment goes today!

[wildkat]

It is discouraging. I felt like that too for a long time. I was sent to a psycologist to because my old doctor believed my whole problem with the loose stools, hives, poor weight, infertility, and skin rashes were because of being anorexic. (I love food - I wasn't anorexic.) I was threatened several times to being sent to the hospital if more weight dropped. My husband being the computer guru he is found this site a little over a year ago. The last three doctors I went to decided I must have IBS medication, acid reflux medication or anti-depressant (that really did make me sick) and if I wouldn't take the medicine then they wouldn't treat me. I couldn't get anyone to give me the test. So I did the elimination diet. When I got to only eating chicken broth and noodles and still sick my husband took me off of wheat (and the rest) and started me on rice only for several weeks. Since that helped I have just added safe foods one at a time. I still have some problems but it boils down to hidden gluten.

[happygirl]

hannah,

i'd be interested to hear what you thought about eosinophilic disorders and if they fit your symptoms. Let me know.

Hope you are having a great day!

Laura

[nikki-uk]

Really! I didn't even know that was possible. I have suspected a possible IgA deficiency but I don't think that would disterb the other tests done.

I found this article on Seronegative coeliac

The most specific tests are tests for Celiac disease endomysial antibodies (EMA) and tissue transglutaminase antibody (tTG) tests. These two tests are IgA based tests and can be negative if you are deficient in the immunoglobin IgA, which occurs in 10-20% of people with Celiac. When either EMA or tTG are positive Celiac disease is very likely and usually the intestine biopsy is positive. Recent studies indicate that the tTG may only be positive in 40% of true Celiacs when mild degrees of intestine damage are present on biopsy. Seronegative Celiac, meaning the blood tests are negative but the biopsy is positive, may occur in up to 20% of Celiacs.

The full article is here.

Open Original Shared Link

In answer to your previous question the guidlines state you need to be eating around 4-6 slices of bread (or equivilant gluten foods) for 6 weeks to gain positive bloods - so it's possible you weren't eating enough gluten.

Having said all that, as others have stated the gluten-free diet isa good diagnostic tool - it really is up to you if you feel the need for a 'formal' diagnosis, then go for the biopsy.

Good Luck in your decision

[white]

I got back my blood tests and most all seems fine they say. The celiac tests were neg and so were the thyroid ones. They said I have hi protien....what's that mean? And as usuall I have a high white cell count with no obvious explantations. For about 3 years I have had probably 50 blood tests with a high white cell count and antibiotics did very little for this. Now he wants to send me to a endocranologist (blood doc) and GI to get a scope. I have been to a blood doc before and got no where. 10 years ago I was seen by the univerity of Iowa as well as Mayo clinic with very little answears except the usual IBS bull ****!!! This doctor is a celiac himself and thought it was very likely that I had celiac but the results were neg. Is there any chance that I can still have celiac and not a positve blood test. I have a loooooooong list of symptoms with many going back over 10 years (especialy the bowel ones). I do have a family history of the disease. I was so sure that celiac is what my problem was and call me crazy but I guess I was hoping that this was my problem so that I could feel better. Now I am back to square one once again with really no answears and am finding myself depressed again. I am beginning to think that what my last doctor said is true.....basicly I am nuts and just need to see a psyciatrist. Does anyone know what is wrong with me? I can't stand feeling like this day after day. I can list my symptoms if anyone wants me to. Thanks for any help.

Hi, I dont know anything about blood cells - I am not celiac either. My husband has gluten intolerance and newly diagnosed. If you have gluten problem, the pain must be too much and not knowing what is wrong must be a terrible feeling.. I guess being real gluten free can be a good idea. My husband got much better, he almost has no stomach or intestine pain - But he is not only gluten free but also soy free, milk products free - processed food free - nuts free -egg free - yeast free - red meat free - corn/orange/tangerine free - raw vegetables free - nightshades free - butter/margarine free (did I forget anything?). This is a kind of disease that I guess progress is slow and requires patience. After being free of all those things, still it is not done, he knows and tries to help his body to recover by also being psychologically strong.

I hope you get better soon and enjoy it.