Doctors Giving Conflicting Info To Here

[AussieAmanda]

I have another longer thread over in the behaviour part of the forum but wanted to write a bit of an update and it falls more into this category.

Basically I went gluten free after stress induced IBS around 7 months ago. I had been gluten free for three weeks when I next saw my Dr and she suggested a celiacs test. I told her I was already gluten free but not knowing anything about it at the time I didn't blink when she did the test anyway.

She told me to stay gluten free for a month or so and then try eating a little bit and see if it still effects me. I did that and it made me feel horrible. I also wasn't aware of just how hidden gluten is in food so really I haven't been totally exclusively gluten free at all until I joined here about a month ago.

After reading a lot of threads here I found that I have several of the other common symptoms of celiacs such as neuropathy, depression (mild) and very bad breast tenderness. My Dr changed my pill about six weeks ago for the hormone changes but I still have some discomfort.

I was so worried about my breasts that I went to a different Dr on Saturday (mine wasn't open that day) and had a breast exam. I asked him if 1) I should have my celiacs test redone properly and 2) whether gluten can cause breast tenderness. He said yes I should have it done again and a definite NO to the breast tenderness.

I had a pre booked app with my regular Dr for Monday so I went along and we checked over a few things. I mentioned re-doing the celiacs test and as I have low iron she said that (at my suggestion) if my iron hasn't risen in six weeks time it may indicate malabsorption and will re-do the test and do the biopsy too. I asked her if gluten can effect hormones and she said basically NO not directly at all and that there is no research to suggest so.

So, where does this leave me? I'm starting to have my old thoughts of having MS or something really horrible as my Drs give conflicting info. Is it that Drs have no real understanding about gluten and its effects, both on and off it? Can I have neuropathy and breast tenderness with just gluten intolerance?

I also asked my chiro about gluten and neuropathy as she has suggested it could be related to my neck and pinched nerves etc.. (which my Dr disagrees with), she went away and read up the reasearch and said that NO if I only have a gluten intolerance then I don't have this autoimmune disease and therefore the neuropathy is not related to gluten.

Sigh.

No straight answers. I suppose I have to wait to do the celiacs. In some ways I'm hoping I DO have it just so it gives me some answers, although even then, I'm sure my Dr will say that celiacs does not cause neuropathy, breast tenderness and depression.

By the way, my psych, even though he hasn't seen any gluten research said that he wouldn't be surprised if gluten effected us in a depressive way as many foods do. At least one of them agrees!

[ravenwoodglass]

Celiac or gluten intolerance can definately effect our reproductive systems. It is know that women can have a hard time concieving and we are more prone to miscarriage and can go through an early menapause. I used to have a great deal of breast tenderness but since celiac threw me into an early menapause I don't know if that was related. My gyno did tell me after I was diagnosed that my periods might return but it was to late for my body to reverse.

As to neuro symptoms, depression and anxiety as well as MS type symptoms with brain lesions that are very similiar to the ones found in Ms are possible with celiac or gluten intolerance. In celiacs the lesions are referred to as UBOs or unidentified bright objects and show up as white spots on an MRI. They are associated with ataxia and movement issues. At times neuropathy, a pins and needles sensation in the hands and or feet, can be from our inability to utilize B12 from food or swallowed supplements. Sublingual B12 will help with that.

If you are going to have any further testing for celiac you really need to stay on a full gluten diet. If you have been gluten free or gluten light the tests will be a false negative. Even on a full gluten diet we can show false negative on testing. If you have been gluten free or very light gluten and you added it back in and it made you sick you do already have your answer.

If you feel you need a doctors diagnosis go back on a full gluten diet with the equivelent of 3 to 4 slices of bread for at least 2 to 3 months and then retest.

[NinaSA]

I had a similar problem with my first test. I had been gluten free for a few weeks when I had my first blood test done. It came back inconclusive. My dr then did a genetic blood test which showed I carried the genes for celiac. This only meant I could have it or I could eventually get it. She performed a small intestine biopsy with an endoscopy to determine that I had it for sure. Even though it made me feel sick I loaded up on gluten before the other tests.

Just a warning... I have been gluten free for about five months and my sensitivity to gluten has greatly increased. If I accidentally eat gluten I get really sick. Big difference from just a few months ago when I would only get a little bloated.

[Takala]

Try cutting back on the caffeine for the breast tenderness and see if that helps.

The artificial form of the progestin used in birth control pills is notorious for causing depression.

My experience with several ob -gyns when I was younger and still taking hormones for bc is that they are clueless as to the effect on some of us, or rather, they know what the side effects can be, but it's a trade off for the safety of not getting pregnant. I noticed nearly 2 decades ago my (then unknown cause) glutening symptoms were much worse the 3 weeks I was on certain bc pills, but I absolutely could not get anywhere with the docs, it was just keep switching to another brand.

Since cystic ovary disease can be a sign and side effect of gluten intolerance and celiac, as can be metabolic syndrome where one can't tolerate carbohydrates well but does better on a higher protein and fat diet, of course this can affect how your breasts feel but don't hold your breath waiting for them to catch up.

If you can you also should try to make sure every medication you take is gluten free, and some B complex vitamins, calcium, and vitamin D and magnesium may make you feel better, also.

low iron - another symptom of gluten intolerance. You can try cooking in gluten free dedicated cast iron pans and adding blackstrap molasses to your recipes or just licking it off a spoon (if this tastes wonderful, you are low in iron

neuropathy- another symptom of celiac or gluten intolerance, shame that more docs don't recognize this yet, but we're working on it

[cahill]

Try cutting back on the caffeine for the breast tenderness and see if that helps.

The artificial form of the progestin used in birth control pills is notorious for causing depression.

My experience with several ob -gyns when I was younger and still taking hormones for bc is that they are clueless as to the effect on some of us, or rather, they know what the side effects can be, but it's a trade off for the safety of not getting pregnant. I noticed nearly 2 decades ago my (then unknown cause) glutening symptoms were much worse the 3 weeks I was on certain bc pills, but I absolutely could not get anywhere with the docs, it was just keep switching to another brand.

Since cystic ovary disease can be a sign and side effect of gluten intolerance and celiac, as can be metabolic syndrome where one can't tolerate carbohydrates well but does better on a higher protein and fat diet, of course this can affect how your breasts feel but don't hold your breath waiting for them to catch up.

If you can you also should try to make sure every medication you take is gluten free, and some B complex vitamins, calcium, and vitamin D and magnesium may make you feel better, also.

low iron - another symptom of gluten intolerance. You can try cooking in gluten free dedicated cast iron pans and adding blackstrap molasses to your recipes or just licking it off a spoon (if this tastes wonderful, you are low in iron

neuropathy- another symptom of celiac or gluten intolerance, shame that more docs don't recognize this yet,but we're working on it

yes we are

[AussieAmanda]

Thanks for your encouragement and support. I went on decaf tea and coffee a couple of years ago so I don't think its related to caffeine. I don't really drink coffee anyway. My Dr said I may be Estrogen sensitive. She refuses to think that I could be peri-menopausal even though my Mum and Grandmother both were at my age (36).

I appreciate all the advice and its good to know that I could still have symptoms that are gluten related even without celiacs. Doctors seem to be so clueless! I'm in Australia so if you in the US manage to get Drs to be better understanding it could take twice as long here as it takes ages for info to filter down for some reason.

[AussieAmanda]

I was also wondering, does anyone know of any articles linking gluten intolerance to neuropathy, depression and breast tenderness. My Drs are so against it all if its not research based. She doesn't even like me talking to other people online like this as she's wary of misinformation. Sigh.

[mushroom]

She doesn't even like me talking to other people online like this as she's wary of misinformation. Sigh.

But not wary of lack of information??

Unfortunately, researchers are only now turning their attention to non-celiac gluten intolerance so you are unlikely to find any scientific articles addressing this issue yet.

[ravenwoodglass]

I was also wondering, does anyone know of any articles linking gluten intolerance to neuropathy, depression and breast tenderness. My Drs are so against it all if its not research based. She doesn't even like me talking to other people online like this as she's wary of misinformation. Sigh.

These are all links to articles on the NIH site PubMed. There is quite a bit of research out there. Once your doctors access these abstracts they will find links to other peer reviewed studies.

Psychiatric symptoms and coeliac disease

Open Original Shared Link

Affective and psychiatric disorders in celiac disease

Open Original Shared Link

Celiac disease can be associated with severe neurological symptoms. Analysis of gliadin antibodies should be considered in suspected cases

Open Original Shared Link

Neurological manifestations of celiac disease

Open Original Shared Link

[sreese68]

I was also wondering, does anyone know of any articles linking gluten intolerance to neuropathy, depression and breast tenderness. My Drs are so against it all if its not research based. She doesn't even like me talking to other people online like this as she's wary of misinformation. Sigh.

I have peripheral neuropathy, and my neurologist is the one who told me to go on a gluten free diet! He's a VERY intelligent, scientist kind of guy. He said the blood test for celiac is often falsely negative, so he doesn't put much faith into it. And that many of his patients who had a negative test got better on a gluten-free diet.

Anyway, my book "Peripheral Neuropathy" put out by the American Academy of Neurology states that celiac can cause it. Dr. Peter HR Green's book "Celiac Disease: A Hidden Epidemic" also discusses peripheral neuropathy. He says that celiac can cause it but also "It is possible that gliadin may be a trigger for neurological issues even in the absence of celiac disease." I read that as gluten intolerance can cause neuropathy. Perhaps a doctor-authored book or two at your next appointment might help?

[AussieAmanda]

I have peripheral neuropathy, and my neurologist is the one who told me to go on a gluten free diet! He's a VERY intelligent, scientist kind of guy. He said the blood test for celiac is often falsely negative, so he doesn't put much faith into it. And that many of his patients who had a negative test got better on a gluten-free diet.

Anyway, my book "Peripheral Neuropathy" put out by the American Academy of Neurology states that celiac can cause it. Dr. Peter HR Green's book "Celiac Disease: A Hidden Epidemic" also discusses peripheral neuropathy. He says that celiac can cause it but also "It is possible that gliadin may be a trigger for neurological issues even in the absence of celiac disease." I read that as gluten intolerance can cause neuropathy. Perhaps a doctor-authored book or two at your next appointment might help?

Thanks for that, I really appreciate that info. I'll have to have a look into it. I'm on the waiting list for seeing a neurologist so I'll have to see who I end up with.

Thanks also for all those links, you guys are so helpful!

[Takala]

Aha! This was the thread I was trying to remember where somebody asked about neuro symptoms. My browser went poof and quit on me and I lost the page earlier, then somebody else asked about neuro symptoms and I found some links and put them in another thread.

See this thread here on Gluten Ataxia

links I had posted

Romberg's Test Open Original Shared Link

Nutrition article on lazy eye which mentions vitamins found in grains, a lot, and gluten intolerance (malnutrition from damage can cause many symptoms) Open Original Shared Link

pdf downloads on ataxia, gluten intolerance, celiac neuropathy:

Cerebellar ataxia, peripheral neuropathy, "gluten sensitivity" and anti-neuronal autoantibodies.

PubMed NIH Open Original Shared Link

"Anti-gliadin antibodies (IgG and or IgA) were found in 40% of cases with idiopathic ataxia, 34% with idiopathic peripheral neuropathy, 17% healthy blood donors and 43% with hereditary ataxia."

pdf downloads on ataxia, gluten intolerance, celiac neuropathy:

Simple to understand one from ataxia.org with some nice illustrations

Open Original Shared Link

Paper, 2006 (has photos, too )

"Neuropathy associated with gluten sensitivity, Journal of Neurology Neurosurgy & Psychiatry 2006 M Hadjivassiliou, R A Gru ̈newald, R H Kandler, A K Chattopadhyay, J A Jarratt, D S Sanders, B Sharrack, S B Wharton, G A B Davies-Jones

Open Original Shared Link

quote from above pdf (they went looking for gluten gliadin antibodies in patients with unexplained neuropathy )

"To avoid referral bias (in view of our interest in the neurological manifestations of gluten sensitivity), we deliberately excluded any patients referred to the gluten sensitivity/neurology clinic with an established diagnosis of gluten neuropathy. The prevalence of antigliadin antibody positivity was 34% in patients with otherwise idiopathic axonal neuropathy compared with 9% in patients with established cause of neuropathy and 12% in controls from the same region.10

A previous controlled study has shown that as many as 23% of patients with established coeliac disease on a gluten- free diet showed axonal neuropathy on neurophysiological testing.8 Given that at least 1% of the healthy population in European countries and the US has coeliac disease and up to 12% has serological evidence suggestive of gluten sensitivity, such sensitivity may well prove to be a common aetiological link to chronic idiopathic axonal neuropathy."

Searching the name Marios Hadjivassiliou and gluten and celiac brings up a lot of useful material, it's not that others weren't helping the research, but that's the best name to narrow the searches under because it's unique. Somebody else grouped some more links together here Open Original Shared Link

Now, mind you, some of that was 5 years ago and you want to be looking at the newer stuff also by Dr Peter Green (Columbia Univ ) and Dr Alessio Fasano(Univ of Maryland Center for Celiac Research )

Somebody listed links to Dr Green's papers here:

Open Original Shared Link

Link here to some things from Dr Fasano

Open Original Shared Link

______

I believe your doctor was trying to tell you that there was no relationship between gluten and neuropathy. All you have to do is print some of this out and it should keep her busy for awhile.

[lynnelise]

Before I went gluten free I was having two full periods a month. My hormone levels were completely off. I believe that gluten is definately connected. Due to the gluten-free diet I now have normal periods.

[AussieAmanda]

Thanks again for your help on this issue. Yesterday I saw the Dr Oz show where he talked about gluten/celiacs and intolerance. I found it interesting that he put a lot of emphasis on it and talked about how common it is compared to MS and Epilepsy. He mentioned the neurological symptoms as well as many others.

Today I had food at a food court which I thought was gluten free but I think it might not have been. It was butter chicken from a curry food chain. I also had some spring rolls which I always think of as safe because they are rice paper rolls. Tonight however I have a bit of tingling in my left arm.

My neuropathy is always on the left side of my body, I wonder if that means that its not from gluten! I have read that it can also be from low iron (which I have) or even pinched nerves. I really don't know which of the three is causing it and I think its going to be months before I get to see a neurologist. Even then, I think that its going to depend on what sort of neuro I get to see and whether they are 'gluten-caused-symptoms' supportive or not.

I find it very hard to be totally gluten free really. Theres always something that slips through the cracks.

[cahill]

My neuropathy is always on the left side of my body, I wonder if that means that its not from gluten! I have read that it can also be from low iron (which I have) or even pinched nerves. I really don't know which of the three is causing it and I think its going to be months before I get to see a neurologist. Even then, I think that its going to depend on what sort of neuro I get to see and whether they are 'gluten-caused-symptoms' supportive or not.

I find it very hard to be totally gluten free really. Theres always something that slips through the cracks.

My neuropathy is also on my left side of my body, but my most of my neurological symptoms are from soy .My gluten reaction is mostly digestive.

Being gluten free really does get easier . We do become PRO's at it

[Meg123]

Hi Amanda

I don't have anything informative to add, sorry, but I just wanted to wish you all the best of luck. I'm here in Perth too, and struggling with, chronic ongoing health issues too. It's stressful dealing with the medical profession, and confusing trying to work at some self diagnosis at the same time.

All the best with it all.