Skeptical, Confused And Frustrated

[joellen]

I am brand new, stumbled on this site doing a search for information. I'll give you the short story.

I went to a new doctor for help and testing regarding hormones. She did a barrage of blood tests, and has told me that I am sensitive (not allergic) to casein, wheat and chocolate. This is based on an IGG panel. Here is why I'm skeptical. The results indicate a 4 for both casein and wheat of mcg/mL. The test reference indicates that these are "very low" in range. I am trying to remember the explanation given to me at the time. As I recall, it had to do with the presence of Candida Albicans IGG of 1.1 (<1 being normal) and Candida Albicans IGA being 1.7. Candida Albicans IGM was 0.5. She had me see a dietician, who of course wanted me to completely eliminate all these from my diet. She said that the results were indicative of leaky gut syndrome. She said that the yeast overgrowth in the gut was being fed by the wheat and sugars in my diet, and that they had to be completely eliminated to get rid of the candida.

While I do not in the least disagree that my diet was loaded with carbs, I did not seem to be having any horrific symptoms, except that sometimes when I ate, it would make me feel sleepy. I know, classic carb overload. I have no issue with changing my diet, I know it's long overdue. Since then, I have sharply reduced my intake of both gluten and sugar. I just can't seem to get to the 100%, even more so because it doesn't seem to bother me if I have them in modest amounts. And eliminating ALL sugar, ALL dairy, and ALL gluten and ALL chocolate is very challenging.

My dilemma is that while I want to be compliant where I need to be, I don't want to be unduly restricted where there is no need for complete and total elimination. I did notice that one time when I "cheated" and had some pizza, about an hour later I noticed that I did have a feeling of racing heart; was it the wheat/cheese or did I just overdo it, or maybe both? I had two slices, not the whole pizza. But, I have avoided it since then.

This whole thing is making me a little crazy. I want to do what makes sense, but I don't want to be led to believe something is true when it's not. I do feel better with the increased protein and decreased carbs. But, holy cow, do I need to feel riddled with guilt if I have one slice of whole grain bread a day?

I would greatly appreciate any insight and advice in this area. My family doctor did not think there was cause for concern, other than agreeing that I should reduce my intake of carbs for all the obvious reasons.

[MySuicidalTurtle]

Is your only symptom tiredness? As in sleepy all the time or normal, overloaded sleepy?

I can only speak from my experience and that of my family. I had symptoms that were not too pleasant and started to impose on my daily actions. So, the choice was obvious. My Mother, on the other hand, had mostly symptoms of joint pain and migraines. She was loaded on migraine medication. Despite having both her children officially diagnosed with Celiac Disease and knowing it was genetic, she didn't want to be tested or go gluten-free. After a few years of us being healthier she decided to make the plunge and did her last gluten meal. She got horribly sick, so, that cemented in her brain that she wanted to be gluten-free. Now, she is way better and off her medication and no more specialists for migraines.

My point is, that you have to see what happens when you are 100% off the things making you sick. You just have to try it. Even if it means eating only plain meat and veggies until you get the hang of the diet. You may feel great and see things improve! Tests right now can only show so much, but the diet is the true test.

It is very hard to change your life, but it can be done. I have been gluten-free for almost 6 years now and casein-free for almost 2 years. The improvements are well worth it and I would never go back. If you make the choice to cheat and get sick there really is nothing to feel guilty about since it is only hurting yourself.

So, my advice is give the new diet a 100% shot and that, in the end, will either confirm or disprove what your problem is.

Good luck!

Kristina

[joellen]

I have had some problems with being tired, but did not know the cause. I do have sleep apnea (genetic and structural), which is being treated, but also am on thyroid medication (for some time), and knew my female hormones were out of whack.

I am not tired all the time, and it doesn't seem that eating these foods cause me to be ill. Although I do get headaches, I believe they are directly related to some arthritic changes in my cervical spine, aggravated by an auto accident years ago. I don't have sinus problems, or have rashes or swelling.

The thyroid tests came back normal, but on the low side of normal. In addition to the dietary restrictions, I was given instructions to add a number of dietary supplements, everything from iron to Vitamin D. I am not anemic, although my ferritin levels were on the low side of normal. Same with the Vitamin D. Normal, but low normal. So, is it normal or is it not? Not to mention the costly multi-vitamin pack, probiotics (which I agree are needed), digestive enzymes (maybe the same?), and on my own, and with agreement, green tea extract and chromium picolinate. Probably some other stuff I forgot as well. The doctor did switch me to bio-identical hormones. I am supposed to go for a re-check on the blood tests, but wonder if 4-6 weeks will really show any changes?

I just don't want to get tossed on the "let's call it gluten intolerance" bandwagon, and be sold a lot of products deemed as necessary to my health and well being, when they are not. I'm just feeling a little aggravated right now, as you can tell.

[mushroom]

Unfortunately, this is one of those things that can't be done half way. It is an all or nothing proposition.

First off, it sounds as if you did not have the full celiac panel blood test initially. If you are still eating gluten, I would suggest you have that test because I think you are probably someone who needs to see that test result. If that test is negative, or if you have not been eating enough gluten for a valid test, then you have go give up ALL gluten from whatever source if you want to find out if that is your problem. You won't be being "tossed" on the bandwagon, you will be doing an elimination test. If you feel much better without gluten, then you should not eat it. Period. No matter the diagnosis.

By the way, headaches, racing heart, low nutrient levels, all are common in celiacs/gluten intolerants. I am one who was never diagnosed because I figured it out and went gluten free before any of my doctors even considered it. I had these things, but there are some who do not have any of the identifiable subjective symptoms who are diagnosed celiacs, almost accidentally while being tested for something else. So you can be celiac, and not suffer on the surface, but still doing damage to your body you are unaware of. Kinda scary, because gluten can cause so much mischief. I ended up with psoriatic arthritis because I was not diagnosed in time.

But anyway, it is your life to live as you choose; just make sure you are living in an informed way

[gfb1]

I am brand new, stumbled on this site doing a search for information. I'll give you the short story.

I went to a new doctor for help and testing regarding hormones. She did a barrage of blood tests, and has told me that I am sensitive (not allergic) to casein, wheat and chocolate. This is based on an IGG panel. Here is why I'm skeptical. The results indicate a 4 for both casein and wheat of mcg/mL. The test reference indicates that these are "very low" in range. I am trying to remember the explanation given to me at the time. As I recall, it had to do with the presence of Candida Albicans IGG of 1.1 (<1 being normal) and Candida Albicans IGA being 1.7. Candida Albicans IGM was 0.5. She had me see a dietician, who of course wanted me to completely eliminate all these from my diet. She said that the results were indicative of leaky gut syndrome. She said that the yeast overgrowth in the gut was being fed by the wheat and sugars in my diet, and that they had to be completely eliminated to get rid of the candida.

While I do not in the least disagree that my diet was loaded with carbs, I did not seem to be having any horrific symptoms, except that sometimes when I ate, it would make me feel sleepy. I know, classic carb overload. I have no issue with changing my diet, I know it's long overdue. Since then, I have sharply reduced my intake of both gluten and sugar. I just can't seem to get to the 100%, even more so because it doesn't seem to bother me if I have them in modest amounts. And eliminating ALL sugar, ALL dairy, and ALL gluten and ALL chocolate is very challenging.

My dilemma is that while I want to be compliant where I need to be, I don't want to be unduly restricted where there is no need for complete and total elimination. I did notice that one time when I "cheated" and had some pizza, about an hour later I noticed that I did have a feeling of racing heart; was it the wheat/cheese or did I just overdo it, or maybe both? I had two slices, not the whole pizza. But, I have avoided it since then.

This whole thing is making me a little crazy. I want to do what makes sense, but I don't want to be led to believe something is true when it's not. I do feel better with the increased protein and decreased carbs. But, holy cow, do I need to feel riddled with guilt if I have one slice of whole grain bread a day?

I would greatly appreciate any insight and advice in this area. My family doctor did not think there was cause for concern, other than agreeing that I should reduce my intake of carbs for all the obvious reasons.

ok... please listen to 'mushroom'. good advice.

[warning] now, my rant.

who is your doctor? what are her/his credentials?

if you wan to figure out a problem you don't start with a stool test; you do blood tests.

seeing a dietician is a good idea; HOWEVER: it has to be a REAL professional, not someone who wants to sell you costly supplements.

the first sign of quackery in this field is any reference to candida.

the second sign is that they want to sell you stuff (esp. probiotics, enzymes, vitamin 'packs').

if you really feel the need for supplements, go online and buy from a reputable online dealer who will give you a 'buy 2 get 3 free' deal with free shipping.

most folks here will tell you that being gluten-free is not that hard once you get into the swing of things. there are lots of concerned, kind (nicer than me!) and helpful folks who are also a huge reservoir of life experiences.

and its a lot healthier (and cheaper) than listening to a bunch of quacks.

[CDFAMILY]

Dear Joellen:

I understand how confusing this all can be but I just want to mention how lucky you are because you have a doctor that seems to be ahead of the typical MD's who only look for Celiac and don't have the education in the other problems that are attached to being Celiac or Gluten Sensitive. On the other hand I do agree that a full Celiac Panel should always be done before suggesting a gluten free diet. This would include:

Total IgA

IgA antitissue transglutaminase (tTG)

IgA antiendomysial antibody immunofluorescence (EMA)

If IgA is deficient, IgG tTG test should also be ordered. At the

discretion of the doctor, antigliaden IgG can also be ordered.

(I also like to see the Gliadin IgA and IgG tests done to see if there is a sensitivity to gluten)

You mentioned that you had blood work done:

She did a barrage of blood tests, and has told me that I am sensitive (not allergic) to casein, wheat and chocolate. This is based on an IGG panel. Here is why I'm skeptical. The results indicate a 4 for both casein and wheat of mcg/mL. The test reference indicates that these are "very low" in range.

There are many Celiacs and Gluten Sensitive patients that are begging their doctors to do these tests and are getting rejected or saying that it is too much bother. I wish my doctors would do these tests for me.

Secondly after being diagnosed in 2005, I was still having problems in 2007 and went to a Cleveland Clinic doctor. She did not even test me for Candida but dx me with the rash on my chest. I took medication twice for this and finally after many years of the rash and white coating on my tongue...it was gone. Candida is a real problem for people with leaky guts which includes both Celiacs and Gluten Sensitive people. It is sad that it took 2 years (actually more like 20 years if you count before Celiac dx) for a doctor to realize this rash was from candida.

Probiotics, Enzymes and Vitamins are really important. If your vitamin D3 level is on the low end of normal you are probably deficient as the knowledgeable doctors now like to see your numbers at a high level around 50-60. You can read Dr. Cannell's info on Vitamin D3 as he is an excellent source.

I had low levels of vitamin D3 which caused quite a bit of neurological problems that did not improve with the gluten free diet. When I began taking 8,000 IU of Vitamin D3 many of my symptoms finally started to improve. Vitamin D3 seems to interact with many different areas of the blood and hormones...so your doctor is smart in finding this deficiency in you.

Low ferritin is actually a common symptom in Celiacs. 3 people in my family had low normal ferritin levels before their Celiac diagnosis. One had a gluten challange and her ferritin, iron and saturation fell to dangerous levels. There is a study in Pub med on using ferritin levels to diagnose you children.

Thyroid problems are also common in Celiacs. My youngest ended up with Grave's disease because they ingnored her high normal TSH levels and ended up crashing to a .001.

As far as feeling better: sometimes you don't know how bad you feel or felt, until you actually get better. I knew I felt bad and was actually thinking I might die from all my symptoms. When I went on the gluten-free diet, I actually got worse and my numbers increased. It has taken a lot of work and lots of research to make myself and my family well and most is done thru research and telling my doctor what to test for because most doctors are clueless with vitamins and nutrition.

As for dieticians...there are just a few Registered dieticians that really know their stuff so you have to be careful. All to many times we have new patients come to our GIG group saying they are allowed to eat Rice Krispies...according to their dietician! 99% that have seen a dietician said they did not learn anything they hadn't already read on the internet.

My advice on food is always go back to the basics and eat simple for a few months then if you really feel the need add some gluten-free items back into your diet. It will be easy to eat basic during the summer with lots of fresh fruits and vegetables.

Finally, dairy can be a big problem and you may not know it because few are tested so you might give that up for a while and see what happens. My example is, after going gluten free my spring allergies suddenly became worse. Each year I thought ok this is the year I won't have a problem and each year it got worse. Finally, we went totally dairy free in January. So far this year I am allergy free. Normally by the time lilacs bloom I go thru 10 kleenexes in the first 2 hours of the morning everyday until mid June. I am keeping my fingers crossed and realize that giving up all my favorite cheeses is not as hard as I thought it would be.

As for buying vitamins, there are reliable online places like Lame Advertisement.com and others so you just need to do your homework and see what is out there and how their prices compare.

Best of luck to you on your new journey into health.

[joellen]

I think one of my reasons for being skeptical is that I was urged to take/buy these supplements that were available for sale at her office. Now, maybe I'm just being cynical, but I'm not sure if she's doing this because she really wants her patients to have the best quality and this is how she ensures that, or if this is just an additional profit center. As far as I know, she does have a good reputation in our area. But again, with the vitamin packs, they are pre-selected and packaged, which you know makes it more expensive in itself, and I don't like the "one size fits all" product. Do I really need 15,000% of vitamin B requirements every day? Would I benefit from more of omega 3's and less of something else? And surely there is more than one source of reputable supplements.

And I still don't really understand the test results. If the reference says it's low, why does she say it's not? Even with the candida, with normal being <1, and mine is 1.1, how significant is that? Don't get me wrong, I KNOW my diet needs adjusting, and I do feel better, but how much of that is just common sense and good nutrition, and how much is a true sensitivity issue? And are the results also based upon typical consupmption? I just don't like the do it or else mentality. The thyroid issue has been present for years, hypothyroid, and when it was first discovered, the results were off the charts, so to speak. That has been controlled by medication for years though.

It's also frustrating that it's so difficult to find appropriate foods when eating out, or when I'm away from home and find myself hungry and don't have something with me. I try to plan ahead. I know this weekend for Mother's Day, we will be with family, and that will be a challenge. In my immediate family, siblings and children, there is no celiac that I'm aware of, but who knows?

With the digestive enzymes, I'm confused also. The bottle says take it before meals, somewhere else I read take it with or after meals. I have two different probiotics, they have different ingredients. One I already had, which I think is a pretty good one, and the other is what the doctor sold me. Is one better than the other? How do I know?

dang it!

[Mtndog]

What kind of doctor is she? A naturopath or DO? From what you said, it sounds like she is (not that there's anything wrong with that- I'm just curious).

Ok, the most important thing with ANY medical professional is that you feel comfortable with them and their way of operating. There's no problem seeking a second opinion.

Something I discovered very recently is that there is a BLOOD TEST for candida (yeast overgrowth). My Lyme doctor recently tested me (I came back negative). Apparently the bllod test has been peer-reviewed and is supposedly accurate Open Original Shared Link

I would go with your gut (no pun intended) and if you feel skeptical, see another doctor.

[joellen]

I think you are correct in that a second opinion may be in order. I really am trying to avoid gluten and sugar as much as possible. We went to a dinner sponsored by our church tonight. I was pretty sure it wouldn't be a friendly food environment, so I ate something before we went. It was an appetizing spread; three kinds of pasta, all of which also had cheese (am also supposed to avoid dairy), a variety of breads, and salad. I did have salad. Brownies were served for dessert. My darling husband had some of everything, and polished off two different brownies. There was a meeting after the dinner, which probably was a good hour long, and once it was over, he couldn't get out of there fast enough. He said it was all he could do to stay awake.

After we got home, he said he was surprised he felt so rotten, he didn't think he overdid it that much on the carbs. He has also drastically reduced his normal carb intake on his own weight reduction plan, so this was not his normal meal. When he went to bed, I noticed that his nose was running and that he was stuffy. I told him that he may himself have some gluten intolerance himself. Since I had no pasta or dessert (ok, one bite, lol), I felt perfectly clear headed. By the time we got home, I was hungry, and luckily I had made some broiled chicken and brown rice for my son before we left, and there were leftovers, so I ate that. At the dinner, I was talking to a friend that I know is celiac and allergic to dairy. She told me she also ate before she came to the dinner. A woman sitting next to me asked me if I was on a gluten free diet, and that her stepson that lives with them is autistic, and they started him on a gluten free diet and saw amazing results. He is a teenager. Hey, if nothing else, this is a great ice breaker, lol.

Mother's Day is going to be tricky. We'll be at the in-laws, and trust me, no one there is gluten free, sugar free, or dairy free. We're having fried chicken, potato salad, coleslaw, and not sure what else. It will be a no-win situation. Luckily, most people are more focused on their own plate than what's on yours. I'm not celiac, and still not completely certain of the degree of gluten intolerance, since it doesn't seem to really bother me, so if I'm as careful as I can be, I'll be ok. But I'll have to completely avoid dessert, or my credibility will be shot!

I was feeling quite smug and pleased with myself that I had no pasta, no bread and no carb hangover. I am not perfect, but certainly making progress.

[gfb1]

I think one of my reasons for being skeptical is that I was urged to take/buy these supplements that were available for sale at her office. Now, maybe I'm just being cynical, but I'm not sure if she's doing this because she really wants her patients to have the best quality and this is how she ensures that, or if this is just an additional profit center.

good instincts. if it quacks like a duck.....

find a new doctor.

If the reference says it's low, why does she say it's not? Even with the candida, with normal being <1, and mine is 1.1, how significant is that?

its not significant at all. i don't mean to challenge anyones belief system (or, maybe i do....); but, this is nonsense.

find a new doctor.

With the digestive enzymes, I'm confused also. The bottle says take it before meals, somewhere else I read take it with or after meals. I have two different probiotics, they have different ingredients. One I already had, which I think is a pretty good one, and the other is what the doctor sold me. Is one better than the other? How do I know?

stop with the digestive enzymes. they are completely unnecessary (unless you have pancreatic exocrine deficiency). in any case, there is NO digestive enzyme that will survive the stomach and small intestine that will help you digest gluten. there are at least 2 being currently tested -- which cleave gliadin, and are NOT commercially available -- but, i suspect they will be of limited use.

f.a.n.d.

lactaid (which is one of the few enzymes that actually works for folks who are lactose intolerant) is VERY different, since it acts on a SUGAR. the chemistry of nitrogen (which is the main component of the protein bond) is a very slow, nonreactive chemistry and takes much longer to react.

f.a.n.d.

potato salad, cole slaw shouldn't be a problem (at least the way we make it). and as for the fried chicken -- its fair game to come up with a 'new recipe', containing either corn meal and masa harina or gluten-free cornflakes -- which will provide a very tasty alternative to the flour variety. i'm sure there's lots of recipes out there... tell everybody that its 'extra crunchy'! my wife comes from the south (USA) and even our nonceliac relatives prefer her gluten-free-chicken.

[joellen]

I am stuck with the chicken; it's going to be ordered. In-laws just moved to a new home, and their grill is not there yet.

I never thought about the lactaid. Now my next thing is to find another doctor for a second opinion that I can trust. I do like my family doctor, and trust him for the most part, but he's a busy guy, and I'm not sure how much he looks at treatments outside of mainstream medicine. He had given me a prescription for Crestor, since my cholesterol levels were sky high. Then I did some reading that said statins were like poison, and avoid them. High cholesterol runs in my family anyway. Doctor number two said she thinks the carbs and sugars are elevating the cholesterol levels more than fat intake. Thus the array of vitamin supplements. And my CRP level was too high. I think that's the point I figured I might as well start planning my funeral.

I guess I should just get the re-test done on the blood work, and go from there.