Sick Of Being Ignored

[SGWhiskers]

So dispite a strict gluten-free diet, I'm convinced I have an additional autoimmune disease. I'm convinced with the same certainty I had prior to my Celiac diagnosis when I knew something was wrong that my doctors were not addressing. I was getting the run around then, and I feel the same way now.

OK, so I moved to a new state recently and needed to get a new rhumatologist. I went in yesterday and told him that dispite a gluten-free diet I continued to have severe fatigue, joint pain, muscle pain, neurologic disturbances, ankle swelling, and a general feeling of malaise. I also said that this all dramatically improved when I got pregnant. I also told him that I wasn't sure that my prior diagnosis of fibromyalgia and depression that were given prior to being diagnosed with Celiac were valid diagnosis because they were given when I was feeling at my worst.

He looks me over, pokes here and there, checks my heart and lungs and tells me that people who are double jointed have more muscle aches and pains than most people and to come back to see him after the baby is born if my symptoms return. My medical records that I gave him did show that I had blood testing for lupus and RA 3-4 years ago with negative findings. 5 years ago, I screened negative for ulcerative colitis and crohn's. My MRI 5 years ago was negative.

So, I know this guy isn't for me, but how do I get the next rhumy to take me seriously? Or should I be seeing a neurologist? I had one back home and he was not any help either.

[GlutenFreeManna]

If you are in an area where you have a lot of choices for doctors, and your insurance allows, look for a D.O. instead of an M.D.. While the medical training they receive is virtually the same I have found for the most part D.O.'s listen to me more as a patient and take more time getting a full picture of my medical history. Unfortunately I don't know of any surefire way to find a really good doctor except word of mouth and luck. I'm going to see a pulmonologist tommorrow that I had to be refferred to get in to see in a decent amount of time (My insurance allows me to see anyone without a referal, but all the others in my area had long waiting lists). I'm just praying he will take the time to listen to my complicated medical history and help me figure out what's going on now. I've experienced what you experienced so many times I would almost rather keep my breathlessness and chest pain (which has been going on for other a month) than go looking for a new doctor.

[tarnalberry]

There's not a lot they're going to do right now, since you're pregnant. Standard blood tests for vitamin deficiencies and what not should already have been run at the beginning of your pregnancy, so those issues should be known about. Much other testing would have to wait until after delivery anyway. I know it's not exactly what you want to hear, but things are put on hold for reasons like this.

You may find that pregnancy "resets" you a bit. (You might not.) This is one other reason that doctors often wait until after the postpartum period; the body is going to be very different anyway.

[cassP]

YES- D.O.'s are great! they seem more caring- and appreciate that the body is so integrated.

so, that's great that you were negative for Lupus & RA!!! really great... but you're right- there are A Lot more Autoimmune Diseases... not sure why these docs are so eager to give up and be lazy???

what about your Thyroid??? are your tests okay? Hashimoto's is common in those with any Gluten Intolerance- and it can even cause body aches...

or what about additional food intolerances??? for some: Dairy, Soy, Corn, & Nightshades can all lead to arthritic pain.

it's weird- my joints have ALWAYS felt WAY BETTER off Gluten. and i greatly improved this last time after going Gluten free for good, but lately- my knees have begun to stiffen MORE- & im not sure if it's my recent HYPOthyroid dx, or if because im gluten free now- my body is now HYPERSENSITIVE to Corn & Dairy???

good luck, hope u find the right doc

[T.H.]

So sorry the doc isn't listening to you. I feel like we ran into this so often before being diagnosed with celiac disease it was frustrating as heck, and when you run into it afterward - even more so!

I'd say the thyroid and hashimoto's that were mentioned previously are good possibilities, especially with the malaise and fatigue.

And one other thing I'd mention, but I want to be really clear that this is not in any way trying to discount your own feelings about your body. 'Cause frankly, you know yourself best, is my thought. If you feel like something else if wrong, there's a good chance you could be right. But what I wondered is - on your gluten free diet, what do you typically eat?

I'll just share what happened with me and my daughter to explain why I ask. I apologize that it's a bit long, but I want to just share the whole thing, so you can get a good idea of what's up, in case this in any way correlates with your own experience, if that makes sense?

I was diagnosed with celiac disease first, then my daughter 2 weeks later. I got sicker going gluten free and my diet dropped to nearly nothing. All sorts of foods made me very ill, gave me the runs so I lost weight like crazy. It was awful. My daughter was exhausted and had depression and emotional issues after going gluten-free.

When I got diagnosed with mild food allergies a few weeks after going gluten-free, the docs thought I was probably hyper-reacting to my allergens, and maybe a few I was sensitive to, and that this explained things. I had dizziness, joint pain, exhaustion, depression, a whole host of things. So I just ate very few foods and tried to stick to the 'good' diet and hoped it would pass soon.

But I started to wonder if perhaps my daughter might have the same problem because she wasn't getting better. So I put her on a diet that eliminated the 8 major food allergens (dairy, tree nuts, peanuts, soy, fish, shell fish, eggs, and wheat), and we kept a food journal. I had to make everything from scratch on this diet, and after maybe a week, maybe less, my daughter's fatigue and other issues improved.

I figured we'd found the issue. She was reacting to something, right? I tried to add foods back in, and sometimes it seemed that we'd found what the problem was on the 'food challenge,' sometimes it didn't. But the more foods we added back in - especially when it was things like gluten-free crackers or gluten-free pancake mixes, etc... - the more her fatigue and other problems came back. We started looking at fructose malabsorption, other allergies, thyroid issues, etc... I had that same feeling that you did: there has to be something else going on, because the gluten-free diet isn't helping like it should. We would think we figured out a food she has issues with, and then lose faith that we'd discovered the problem, over and over again. It was SO frustrating and upsetting.

Then, my daughter started developing gut pain in response to gluten CC for the first time about 6 months into the gluten-free diet. And with the gut pain, we have figured out the issue: even on a gluten free diet, she was getting too much gluten to handle, because she's more sensitive to gluten than the average celiac (we have 4 in my family). We've now done some experiments. I don't tell her how many ppm of gluten a certain food has, but give her a little bit of it to see how she does. And right now, anything above 10 ppm of gluten seems to give her gut pain and a gluten reaction. If she has more than just a little of foods that are 5ppm -10 ppm, she also has gut pain and other issues (like the fatigue).

If she avoids all of these, she's better. Her symptoms finally go away.

I started wondering if perhaps this was my issue, as well. I was reacting to everything - maybe it wasn't everything, but gluten CC instead? So we've experimented with me, now, too, as so far, that is what it seems to be. If I grow something in my yard, without any fertilizer or anything, I have been able to eat it.

If I buy these things at the store, I usually get sick. Doing a lot of research, I've discovered how nearly impossible it is to find foods that are 100% gluten free. Mulches used on produce can have gluten (straw from the gluten grains that has CC, for example); sprays to keep produce ripe, or pesticides, or organic fertilizer, or coatings can have gluten; soaps used to wash processing lines can have gluten; grains can be harvested, transported, and milled on shared equipment before they even enter the gluten-free facility.

Most of the time, this isn't an issue. These are LOW levels of gluten, most below 10ppm, some below 5ppm, so testing for that amount is nearly impossible with the current tests that we have. And most people aren't sensitive enough to gluten for this to matter, you know? But for a rare few of us, we are SO sensitive, it's very difficult. And now that I have slowly been growing my own produce, and finding farms that don't have ANY gluten used on their stuff, I'm finally able to add more foods in to my diet.

When I get glutened now, I get exhausted, I get vertigo symptoms, I can get tingling or numbness down my arms and sometimes my legs, depression, joint aches, muscle aches, and even gut symptoms as well. If I get hit a few times in a row, it just feels like this is all constant, all day long. I even got glutened by my salt until I found a company that had salt that wasn't processed in a shared facility with gluten.

Again - it's unlikely that this is your issue. Far as I can tell, this is pretty rare. But if your doctor isn't helping you, it might be worth your while to try a limited diet for a brief period just to check and see if food may still be the cause of your continued problems. Might even be a sensitivity to something else that is in a lot of foods, like sulfites or histamine sensitivity.

If you were going to do something like this - because really, it's unlikely to make anything worse, yeah? - might be a good idea to just, like, go for produce for a few days. Peel everything, avoid ANYTHING processed, including oil, salt, seasonings, anything. Avoid anything you can't peel, like salads and herbs. Just for a few days, to see if you feel any different, you know? If you did, at least you'd have an idea that whatever IS affecting you can be affected by your diet, yeah? Whatever it is, it would at least give you a starting point to figuring it all out, since your doctor can't seem to get off his butt to help you out properly.

I very much hope that whatever the issue turns out to be, you can find the answer and get pain free and healthy again!

[Cypressmyst]

You may want to find a Naturopath and have them check you for secondary infections and parasites. Some of which can mimic gluten symptoms.

T.H. You have my respect and condolences.

[SGWhiskers]

You have given me a lot of food for thought. It's scary to think about the processing of our food. I know I react to foods processed on shared lines. I've also got a suspicion that I'm someone who reacts to too much gluten in gluten free mixes. My thyroid's been checked a million times with several different forms of the tests. It always comes out well within normal. I'm realizing that I need to do another strict elimination diet. I gave it a try between 3-5 months gluten-free, without improvements. Since then, I've found problems with several other foods I thought were safe for me. I guess once baby's born that will be my first step. In the meantime, I'll probably check out another rhumatologist to see if I get a better response.

Did I mention that this guy explained away my joint/muscle/bone pain, joint swelling, and neuro symptoms by saying I was mildly double jointed and double jointed people get more aches and pains. He didn't have any suggestions for what to do about the pain either. Even I know that exercise, physical therapy, and strength training helps that kind of pain.

How does one go about finding a reputable naturopath?

[Cypressmyst]

Gotta love the double jointed explanation. Wow. How utterly useless. If it wasn't such a serious topic some of these malpractice responses would be comical.

I'm working on finding a local Naturopath myself. I know that they are more interested in looking at the whole you rather than pushing pills like an M.D. They can order stool, saliva, and blood tests to help figure out what damage gluten has caused. Make sure you ask how knowlegeable they are about gluten before making the appointement.

I'll be heading to the Health Now clinic in California (I live in Wisconsin) in two weeks to get checked out by the Doctors there and put on a plan to heal myself. Right now they are the only Doctors I feel I can trust. And the only ones that offer any hope of getting off of my thyroid meds.

Once there they will give me an idea of how to find a competent Naturopath in my area to work in tandem with them from a distance. I'll post the info once I get back.

You can also google Naturopath and your state and see what comes up. I know there are a number of them listed in Wisconsin. There may or may not be reviews. Another place to go would be to find a natural foods store and ask them if they know or recommend anyone. They are often connected in that way.

Best of luck to you!

[Loey]

So dispite a strict gluten-free diet, I'm convinced I have an additional autoimmune disease. I'm convinced with the same certainty I had prior to my Celiac diagnosis when I knew something was wrong that my doctors were not addressing. I was getting the run around then, and I feel the same way now.

OK, so I moved to a new state recently and needed to get a new rhumatologist. I went in yesterday and told him that dispite a gluten-free diet I continued to have severe fatigue, joint pain, muscle pain, neurologic disturbances, ankle swelling, and a general feeling of malaise. I also said that this all dramatically improved when I got pregnant. I also told him that I wasn't sure that my prior diagnosis of fibromyalgia and depression that were given prior to being diagnosed with Celiac were valid diagnosis because they were given when I was feeling at my worst.

He looks me over, pokes here and there, checks my heart and lungs and tells me that people who are double jointed have more muscle aches and pains than most people and to come back to see him after the baby is born if my symptoms return. My medical records that I gave him did show that I had blood testing for lupus and RA 3-4 years ago with negative findings. 5 years ago, I screened negative for ulcerative colitis and crohn's. My MRI 5 years ago was negative.

So, I know this guy isn't for me, but how do I get the next rhumy to take me seriously? Or should I be seeing a neurologist? I had one back home and he was not any help either.

So sorry you're all going through this. I just moved to a new town/state and my new GI wasn't taking me seriously. After insisting on a capsule endoscopy (like my old GI in NJ wanted me to have when I moved) he discovered I have an ulcer in addition to the Celiac and has done a total 360 in his attitude and demeanor. I have a biopsy of my ulcer on Friday. Hope these help.

Loey

Here's are links to some sites that might help you locate MD's or DO's:

Open Original Shared Link

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