Symptoms Changing Or Diminishing Even While Eating Gluten

[NewNicole]

Although I was diagnosed in November with celiac I am still eating the gluten. Not because I want to torture myself but I am not confident with my doctor so I want another doctor to see my issues. But recently my symptoms have changed and I am wondering if maybe I don't have celiac after all. My symptoms have been 8 months of severe abdominal bloating, intense abdominal pain, migraine headaches, joint pain (doctor says he sees arthitis in joints), brain fog, fatigue, leg pain that wakes me up in the middle of the night, and only within the last 4 months has there been a change in bowel habits to loose stools, I have had pale almost white stools and small traces of blood also. One of the blood tests said I was positive the others said no. My biopsy said it could neither confirm nor deny my diagnosis. So now my stomach isn't bloated like it was, the intense pain is only after meals and doesn't last as long, the joint pain is more severe and the migraines are happening more. The stool still going back and forth between loose and normal but really that has diminished a bit also. So I appear to be having less abdominal issues and more of the others. Is it possible to still be eating gluten and have the symptoms change or diminish? Or do I not have celiac? And do I have to wait for the symptoms to be more apparent for another doctor to be able to diagnose me?

Thank you,

Nicole

[GFinDC]

Symptoms are very variable for people. You can read through this board and find all kinds of symptoms that people have experienced. I had various rounds of good times and bad before going gluten-free. Your body is not trying to be sick after all, it is trying to be well and get by these things. Sometimes it is more successful than others is all. And sometimes you may be eating less gluten than others and not realize it. Sometimes your gut flora may be more out of whack than others also, depending on the amount of sugar in your diet and the gluten. Also how well you are absorbing nutrients and vitamins can vary depending on damage to your intestines and inflammation levels.

One thing I think you can count on is if you have celiac the trend over time is going to be negative, as your body has limits. How were you diagnosed? If you had a positive on the blood test I think that is pretty much definitive. The way I understand it, they don't have many false positives, but false negatives are more common.

There is an article on this site about the testing and how it works. Could be worth looking up and reading if you are not sure about them.

[NewNicole]

The IGA blood test was positive. The biopsy stated that there is a mild increase in intraepithelial lymphocytes but that was not enough to either confirm nor deny the diagnosis. I also had low iron bonding and a mild increase in my thryroid level and SED rate which my doctor feels is indicitive of the cealiac disease. However he was wishy washy and felt I had IBS and then changed his mind back to celiac. I have also been confirmed as having small intestinal bacterial overgrowth which could be associated with IBS. So I just want a definitive answer. And although the diet did help it didn't clear it all up so I don't want to leave it alone until I have a doctor confirm my issues. I have posted here before and others have stated not to worry about the diagnosis as much because if the diet helps that's all that matters. But I am concerned that I will continue experiencing this and just want to know without a shadow of a doubt that this is my issue. So with all that being said I just wanted to check if it's normal for the symptoms to come and go or change with celiac. And if a doctor will still be able to diagnose me with the changes I am having or should I wait for it to flair up again to see a doctor. Thanks for your help.

[Gemini]

The IGA blood test was positive. The biopsy stated that there is a mild increase in intraepithelial lymphocytes but that was not enough to either confirm nor deny the diagnosis. I also had low iron bonding and a mild increase in my thryroid level and SED rate which my doctor feels is indicitive of the cealiac disease. However he was wishy washy and felt I had IBS and then changed his mind back to celiac. I have also been confirmed as having small intestinal bacterial overgrowth which could be associated with IBS. So I just want a definitive answer. And although the diet did help it didn't clear it all up so I don't want to leave it alone until I have a doctor confirm my issues. I have posted here before and others have stated not to worry about the diagnosis as much because if the diet helps that's all that matters. But I am concerned that I will continue experiencing this and just want to know without a shadow of a doubt that this is my issue. So with all that being said I just wanted to check if it's normal for the symptoms to come and go or change with celiac. And if a doctor will still be able to diagnose me with the changes I am having or should I wait for it to flair up again to see a doctor. Thanks for your help.

Nicole.....I know it can be very hard to believe when symptoms come and go but they absolutely can and, from all you have described, you are definitely a Celiac. My stomach, for about 12 years, felt like I was trying to digest glass after eating a meal. It was awful and I spent many a day in bed, barely able to move because of the pain after eating a meal. However, as I aged, things changed and my stomach pains decreased and almost went away. This is why it took 20 years to get a diagnosis. I developed other symptoms I never had before and had lifelong anemia, along with large volume, pale stool. It is the nature of autoimmune problems to change....the autoimmune system is not constant and can fluctuate depending on a number of issues. Celiac Disease is not called "The Great Pretender" for nothing!

You have stated that you only have a problem after eating.....very big clue there. Bacterial overgrowth is extremely common WITH Celiac Disease. As for IBS, that's a catch all term doctors throw around when they cannot find a problem. Something is irritating your bowel and with your symptoms plus testing results, I would go gluten-free ASAP and adhere strictly to the diet. You do not want all the other problems that can happen when you do not eliminate gluten from your diet. If the diet didn't clear up all your problems initially, it could be that you have more than one intolerance, specifically dairy. I have to limit my dairy intake significantly because I cannot tolerate normal levels of it.

Good luck to you and I hope you feel better soon!

[ang1e0251]

Maybe if you could post your exact test results for both the bloodwork and the endoscsopy, those who are proficient at reading the tests could help you with it.

Reactions do change. I would say in the year I have been gluten-free, when I do have gluten, each time it is different. So I am not surprised that your reaction varies. I'm not really sure what you want from a dr. Do you want to hear you don't have celiac disease and will go to more dr's until someone says you don't? Or is it that unless a medical professional says yes, it's celiac, for sure, you can't buy into it? If that's the case why don't you make the effort to go to one of the celiac centers in the country. You would probably feel you would be treated by the best pro's available then and could feel good about the result.

With your serious health problems it sounds like you are really suffering and need to resolve your doubts about a dx soon. I wish you luck and will be thinking about you. Keep us posted on your results. We care.

[loxleynew]

I am in very similar to you. Most of my tests were negative for celiacs. Two biopsies and the genetic testing was negative. One regular bloodtest was negative and one was positive. My first week on the diet I thought it was stupid and this is not what I have. Recently I have been feeling better even though it's only 4 weeks in. I would say give the diet a good 2-3 months before giving up on it. The real question is this. You say you feel really sick all the time, why not just try a diet that could help you for merely 2-3 months? That's basically no time at all to possibly cure yourself.

Also for the 3 years leading up to my diagnosis my symptoms varied. This was while I was eating gluten all the time. I used to get bad nausea and abdominal pains, but towards the last year that all stopped and it changed into anxiety and loose stools. So yes the symptoms definatley can and will change the longer you go not adhering to the diet.

[NewNicole]

So here is what the results are on the tests I have had done.

IGA 23

IGG 3

Tissue Transglutam AB IGA 3

The endoscope results states "biopsy shows entirely normal villous architecure with a mild increase in intraephelial lymphocytes noted at the tips of the villi. Although the findings are not specific, the possibility of latent celiac disease cannot be excluded."

The hydrogen breath test for small intestinal bacterial overgrowth came back positive.

The SED rate is only mildy increased at 32

The TSH level is 3.4 (my lab lists that as mildly increased although I have heard some labs use 5.0 as a marker)

iron level is 33

iron bonding cap 336

iron saturation 10

So I don't have a major problem with the diet and going on it. I was gluten-free for a month but when I went to the doctor he came into the room saying IBS and left trying to say celiac. My main problem is that I am afraid that if I strictly go onto the diet and say that it's celiac that down the road it will return and it will be more intense because it never was celiac. And I am afraid that by not taking care of this now I will be in worse shape down the road.

I love the description of the broken glass. That is a good way of putting it. I usually say it's like someone with a knife trying on the inside of my stomach trying to get out. That pain is regulated though. It's very punctual and not necessarily with food. I have the pains every 3 hours on the dot and then when I eat the gluten it will also happen at that point. The headaches, nausea, joint pain (dr also diagnosed me with arthitis during this), brain fog, severe fatigue, teeth crumpling for no reason, pale, floating stools, and severe bloating. The stomach bloating is going down and the intense sharp pain are less often. the others are still there and joint pain is more intense. Plus everytime any stomach virus comes into the family I end up in the hospital. So I am always scared. Scared that this isn't the answer and I will be like this forever.

Thanks for your opinions and help. I do appreciate all of it.

[Gemini]

So here is what the results are on the tests I have had done.

IGA 23

IGG 3

Tissue Transglutam AB IGA 3

The endoscope results states "biopsy shows entirely normal villous architecure with a mild increase in intraephelial lymphocytes noted at the tips of the villi. Although the findings are not specific, the possibility of latent celiac disease cannot be excluded."

The hydrogen breath test for small intestinal bacterial overgrowth came back positive.

The SED rate is only mildy increased at 32

The TSH level is 3.4 (my lab lists that as mildly increased although I have heard some labs use 5.0 as a marker)

iron level is 33

iron bonding cap 336

iron saturation 10

So I don't have a major problem with the diet and going on it. I was gluten-free for a month but when I went to the doctor he came into the room saying IBS and left trying to say celiac. My main problem is that I am afraid that if I strictly go onto the diet and say that it's celiac that down the road it will return and it will be more intense because it never was celiac. And I am afraid that by not taking care of this now I will be in worse shape down the road.

I love the description of the broken glass. That is a good way of putting it. I usually say it's like someone with a knife trying on the inside of my stomach trying to get out. That pain is regulated though. It's very punctual and not necessarily with food. I have the pains every 3 hours on the dot and then when I eat the gluten it will also happen at that point. The headaches, nausea, joint pain (dr also diagnosed me with arthitis during this), brain fog, severe fatigue, teeth crumpling for no reason, pale, floating stools, and severe bloating. The stomach bloating is going down and the intense sharp pain are less often. the others are still there and joint pain is more intense. Plus everytime any stomach virus comes into the family I end up in the hospital. So I am always scared. Scared that this isn't the answer and I will be like this forever.

Thanks for your opinions and help. I do appreciate all of it.

Nicole....did they do an "EMA" test on you? This would be a blood test that should have been included on the Celiac panel. I ask because the EMA is 100% specific to Celiac....no other disease will cause a positive BUT Celiac.

You are also hypothyroid...so am I. Anything over 3 is considered hypo by progressive doctors. I actually totally suppress my TSH to bring everything under control but that's a conversation for another day! I don't want to make your head spin.

The lab results need to have total ranges posted...they differ from lab to lab. They do not look bad, however, but that may mean absolutely nothing. Blood work tends to diagnose Celiac at end stage, after many years of suffering. I will say that from all these symptoms you have posted, I would diagnose you from those!

The joint pain and fatigue can also be caused by your low thyroid too. I was suffering from both really bad and there were days when I almost needed a crane to haul myself out of bed and go to work. But pale, floating stools? That's almost a given with celiac disease. I would make sure you include these symptoms HEAVILY in making a diagnosis. Sometimes testing can be iffy but that is the nature of autoimmune problems.

IBS will not give you many of your symptoms....that's a general "the bowel is irritated" statement. Celiac is a systemic, autoimmune disease that can affect every organ in your body and this would explain all the varied symptoms. I hope you can get the answers you need....we have all walked in your shoes and understand completely.

[NewNicole]

I don't believe I did have that one test. I will have to check on that. So the one test that was positive could be for something else also? The lab uses levels under 11 for guidelines on the IGA and IGG. So the 23 is a positive test. I am interested in finding what else could make that rise. And the TSH my lab shows the guideline being 3.0 and below but my doctor said that it wasn't anything to even worry about. You mentioned suppressing your TSH. Why and how may I ask. I know you mentioned another time but I am curious if that is something that would pertain to me. Thank you.

Nicole

[GFinDC]

I don't believe I did have that one test. I will have to check on that. So the one test that was positive could be for something else also? The lab uses levels under 11 for guidelines on the IGA and IGG. So the 23 is a positive test. I am interested in finding what else could make that rise. And the TSH my lab shows the guideline being 3.0 and below but my doctor said that it wasn't anything to even worry about. You mentioned suppressing your TSH. Why and how may I ask. I know you mentioned another time but I am curious if that is something that would pertain to me. Thank you.

Nicole

Hi Nicole, maybe this will help. This is a quote from an article on testing right here on celiac.com

https://www.celiac.com/articles/57/1/Interp...ults/Page1.html

Interpretation of Celiac Disease Blood Test Results

* By Scott Adams

* Published 07/26/1996

* Celiac Disease Diagnosis, Testing & Treatment (Gluten-Free Diet)

* Rating

Quote

IgA anti-gliadin antibodies are less sensitive but are more specific. In clinical trials, the IgA antibodies have a specificity of 97% but the sensitivity is only 71%. That means that, if a patient is IgA positive, there is a 97% probability that they have celiac disease. Conversely, if the patient is IgA negative, there is only a 71% probability that the patient is truly negative for celiac disease.

End quote

From that it sounds like you only have a 3% chance of not having celiac. Welcome to the gluten-free world!

[NewNicole]

Thank you. That makes me feel much more comfortable with the diagnosis.

[Gemini]

I don't believe I did have that one test. I will have to check on that. So the one test that was positive could be for something else also? The lab uses levels under 11 for guidelines on the IGA and IGG. So the 23 is a positive test. I am interested in finding what else could make that rise. And the TSH my lab shows the guideline being 3.0 and below but my doctor said that it wasn't anything to even worry about. You mentioned suppressing your TSH. Why and how may I ask. I know you mentioned another time but I am curious if that is something that would pertain to me. Thank you.

Nicole

With autoimmune hypothyroid, it can swing from hypo to hyper because of the fact it is autoimmune in nature and hard to control. Stress and many other factors will affect thyroid function. My antibody levels of my thyroid (blood work) were supposed to be under 40....this was the lab range for normal. Mine was 1200, which meant that my thyroid was being totally destroyed by my autoimmune system. This was right around the time of my Celiac diagnosis. I had been on meds for a long time but wasn't absorbing them so my thyroid was basically untreated for years and this allowed the destruction to continue.

I went to doctors and they were useless because they only went by my numbers from my blood work and never asked about my symptoms. I finally found a doctor who knew how to treat thyroid disease and what she did was this.....your TSH is secreted by your pituitary gland and it basically will prompt the thyroid when thyroid hormone levels drop outside the normal range, to release more thyroid hormone. When your thyroid is under attack from your autoimmune system, the pituitary is constantly screaming for more hormone, which makes your thyroid work really hard. By going by your T3 and T4 levels on the blood work, and NOT your TSH, when figuring out thyroid hormone replacement dosage, you essentially are giving your body all the hormone it needs synthetically and this gives your thyroid a rest. You should include in this how you feel also....dose until symptoms go away. Most doctors never do this because they feel a person will get too much hormone. My answer to that is.....it won't do any good to under-dose someone when they still have flaming symptoms! That isn't treatment, that's malpractice!

In the 4 years I have been gluten-free and treating my thyroid by looking at T3 and T4 levels, my antibody levels have gone from 1200 to 46, with 40 and under being the normal range. It doesn't get any better than that! I am looking forward to my next blood work set because I will not be satisfied until I am in the normal range and I'm only 6 points off now!

Funny enough, before the TSH test was developed, doctors used to treat thyroid this way and some bone head thought the "new" way was better. It isn't better, it just is cheaper for the insurance company!

As for your Celiac testing, your elevated IgA signals something. They should have down an EMA (Endomysial antibody), as this test is 100% specific to Celiac.

This means no other disease will cause a positive. However, many people test negative on the blood work and still have celiac disease. From all of your other symptoms and problems stated, I believe you have a problem with gluten. Sometimes you have to look at the WHOLE picture and put 2 and 2 together.....something seldom done today. This, coupled with a positive dietary response, should prove to you that you need to go gluten-free and stay that way. I know, for some this is very hard and they want a super definitive answer. You could have one down the road but by then, you might be a lot sicker and have additional autoimmune problems because you kept eating gluten. Take it from someone who went 20 years before I got a diagnosis....no fun! It's taken me 4 years just to get my thyroid straightened out!

[NewNicole]

That is very intersting about the thyroid. I don't have anything to worry about then because my T4 is fine. It's just the TSH. So I will not worry about the thyroid. And if I do see another doctor about the celiac I will check on the other blood test. But from all that I have read and seen I don't think I can any longer wish that I didn't have it. Thanks for your help.

[Gemini]

That is very intersting about the thyroid. I don't have anything to worry about then because my T4 is fine. It's just the TSH. So I will not worry about the thyroid. And if I do see another doctor about the celiac I will check on the other blood test. But from all that I have read and seen I don't think I can any longer wish that I didn't have it. Thanks for your help.

Nicole......I would keep an eye on your thyroid and do a blood panel every year....or if you develop symptoms of a problem. A TSH of slightly over 3 may be OK for you but that is considered to be on it's way to a lower functioning thyroid. If your T3 and T4 levels are in optimal ranges and you do not have symptoms of a low thyroid, then I wouldn't sweat it. The relationship of TSH levels to symptoms is not linear. Some people can have a TSH much higher than others and function well. My TSH was only 7 when I went to the doctor and requested thyroid testing but it felt like it was 100. I had advanced symptoms and could barely get out of bed in the morning to go to work. Others on this forum have posted much higher TSH levels at time of diagnosis and their symptoms may or may not have matched mine. Autoimmune problems are funny things....almost like they have a mind of their own!