Symptoms And Other Conditions

[roted]

Hi, I am new to this forum, but first hand know the value of forums. My daughter-in-law was recently diagnosed with celiac disease. She gave birth to her first child 9 months ago and since then has not been feeling well. She has gone to many doctors, had many tests done and nothing shows up as being a problem. Then she was finally tested for celiac disease, as her mother had been diagnosed with celiac disease a few years ago. Her test was positive for celiac disease and she has been on a gluten-free diet since then, but she still isn't feeling "right". She gets pains behind her eye and usually has a dizzy feeling and is very tired all the time. Taking care of a 9 month old is tiring, but she is always tired. She is very concerned about not feeling right and my son, as well as my husband and I are concerned also.

My question is.....has anyone had similar symptoms? I recently read on this forum, a possible connection between celiac disease and bipolar disorder.....are there any other conditions that are associated with celiac disease? I also read that there might be a problem with vitamin B12 absorption. Anyone have any experience with symptoms cased by vitamin B12 deficiency?

She only had a blood test to diagnose the celiac disease....is it necessary to have a biopsy done? Is there any dangers with that proceedure?

I would really appreciate any information or advice you can give me. As I said, I am very aware of the value of forums and would be greatful for any information you can give me.

Roted

[~alex~]

Celiac can cause decreased absorption of B12 and many other vitamins. Low B12 could definitely contribute to her feeling unwell. B12 shots or pills that dissolve under her tongue would probably be good for her. She might also be anemic which her doctor can easily test for and prescribe iron pills or iron IVs for a while if her levels are quite low. Dizziness and fatigue can definitely be caused by anemia.

I think if she tested positive with the blood tests she most likely has Celiac especially with her mom also having it. For a biopsy she would have to start eating gluten again to make sure she didn't get a false negative. I believe the endoscopy is a pretty low risk procedure. If her doctor has diagnosed her with with Celiac it doesn't seem necessary unless the doc wants to make sure there is nothing else going on.

There are many diseases related to Celiac. It is not necessarily that Celiac causes them but that they share the same genetic vulnerabilities as Celiac. It is an autoimmune disease and autoimmune diseases tend to travel in packs. Diabetes and thyroid problems are among the most common that occur with Celiac I think but I am sure there are many others.

If she is only recently diagnosed she may just need a bit of time to heal before she starts feeling better but it probably a good idea to have blood tests taken to see about anemia and other deficiencies.

[trents]

Alex has good advice. Your daughter in law would do well to have not only a CBC (complete blood count) but a CMP (complete metabolic panel) and allergy testing as well. Several other autoimmune diseases are strongly associated with celiac disease as are food allergies due to leaky gut syndrome.

Steve

[~alex~]

I also wanted to mention the possibility of bacterial overgrowth of her small intestine. After I was diagnosed and treated for that with antibiotics I felt significantly better. For testing I had a tube put up my nose and down into the intestine while under sedation to get a sample but I have since heard of less invasive ways of to test for it. Just another possibility of something that could be keeping her feeling crummy despite following the gluten free diet.

[frec]

I agree with Alex and Steve. Your daughter-in-law's intestines are still healing if she only went on the diet recently. It can take up to a year and even longer if you are older. That means she is still not absorbing nutrients well. It is also hard to eat right when you are a new celiac--it is a tough diet to follow, and she is busy with a new baby as well. Since she was pregnant and is now probably breast feeding she is giving a lot of her nutrition to the baby. If your regular doctor doesn't pay satisfactory attention to this she should see someone like a dietician or a naturopath with a background in nutrition. My naturopath has been an enormous help--the supplements he gave me cleared up a lot of problems.

[Aligray]

That is good advice guys!

I have been gluten free for 9 months and it has taken all 9 months to begin and work thru the healing process.

I saw an allergist/immunologist as well. I also saw a Rheumatologist and thank goodness i did b/c i pretty much had NO vitamin D in my body b/c before being diagnosed with Celiac I was unable to absorb crucial vitamins and nutrients. I was almost diagnosed with Lupus and i was in the process of going on short term disability. I was just that sick! But i had been on the gluten free diet for almost four weeks and began to take the vitamin D and after four weeks my levels were climbing and now i feel soooo much better!

Good luck!

-Ali

[SallyC]

Pain behind her eyes makes me think of her thyroid levels. I have had this problem in the past. Also being tired was a way of life for me. From the time I got up in the morning all I could think about was when I would be able to go back to bed. I lived this way for 20 years thinking that it was due to raising a family or the stress of life. I was told my thyroid levels,with medication, were fine but I knew something else was wrong.

[roted]

Thank you all soooo much for your responses. I will pass all your information on to my daughter-in-law and encourage her to change doctors, since her primary care physican now doesn't seem to be doing much to get to the bottom of her problems. I did mention to her about the Vitamin B12 deficiency, but her doctor said she didn't think that was a problem. Her CBC didn't show anemia. But couldn't she be Vitamin B12 deficient, and not be anemic?

I will also encourage her to look into finding a nutritionist who specializes in Celiac disease.

Again, thank you all and if you have anymore to recommend, please do so. I will continue to check into this forum.

[tBar-251]

I did mention to her about the Vitamin B12 deficiency, but her doctor said she didn't think that was a problem. Her CBC didn't show anemia. But couldn't she be Vitamin B12 deficient, and not be anemic?

Just a note to say that my "regular" doctor never once mentioned anemia as a problem for me, except to say I was "borderline" because the scale for it is pretty wide. And I've always been "borderline" except during my first pregnancy when I was clearly "low" and only then did the alarm bells sound. In mainstream medicine, if you're on the extreme side of low, even though it's falling off the charts, they will just look at the numbers and say it's "normal" because it meets a numeric definition. But "borderline" is NOT normal! I went to a naturopath who tested my ferritin levels and deemed me most definitely anemic, and in a serious crisis kind of way (ferritin level was 6, and that's getting kind of scary). This was only a few months ago, and I've been on iron and B-complex ever since (gluten free of course). So what I'm trying to say is, make sure you and your daughter-in-law actually look at the numbers, and if you don't understand, feel free to ask people on the forums what they mean. Don't just take the doctor's word for it. And get her ferritin level tested. This is a critical piece of info that is often (usually) overlooked.

I can totally relate to what your daughter-in-law is going through.

Also, I want to say your daughter-in-law is very lucky to have a caring mother-in-law. I really cannot emphasize this enough, because you are truly one-in-a-million. My mother-in-law was pretty special too.

Just tonight, I went and purchased the book, "Dangerous Grains" by James Braly and Ron Hoggan and I can already tell you, it's essential, and I highly recommend it because it begins at the beginning, explaining everything. All the problems, related issues, everything.

[Ursa Major]

You asked about bipolar and celiac disease being related. Yes, gluten can affect the brain in scary ways, it can cause people to be falsely diagnosed with bipolar, schizophrenia (due to gluten acting like an opiate and causing hallucinations) and, most commonly, depression.

But since your daughter in law is now on a gluten-free diet, bipolar is probably not a problem.

I suggest she take dairy out of her diet, the same goes for soy. It could make a difference for the better.

And absolutely have her get tested for levels of ferritin, vitamin D, vitamin B12 and B6, vitamin K, potassium, calcium and magnesium. And yes, have her get a copy of the test results, she is entitled to it. Doctor's offices will tell you 'everything was normal', when some numbers are pretty scary. 'Normal' is often far from optimal. Especially with the oftentimes huge so-called 'normal' ranges.

For instance, our lab considers ferritin levels in between 40 and 300 to be normal. But they don't think even a level of 20 is a big problem, unless your hemoglobin levels are down (well, they'll come down eventually, but it takes a while). But the optimal level is around 100.

Just like I was tested for adrenal problems. Our lab says that an aldosterone level in between 60 and 780 is 'normal'. That is a crazy huge so-called normal range. When my level came back at 73, the nurse called to tell me that everything was normal and there was no reason for concern. But the optimal level is above 500! Anything below that is definitely a problem. I had to go to Germany for a doctor to do something. While my doctor here in Canada still claims I don't have an adrenal problem.

[georgie]

She gave birth to her first child 9 months ago and since then has not been feeling well.

This may be significient. It is a very typical pattern for th onset of Hashimotos Thyroid - an autoimmune disease of the Thyroid. If her Dr is only testing TSH - he may miss it for years. She needs a complete Thyroid panel of tests ( TSH, Free T4, Free T3, and Thyroid Antibodies ) to check for this. Most people with Hashimotos feel best when they are medicated so the FT3 sits at the top of the normal range and not just midway.