Not Sure What To Do

[Swthrtpookie]

I don't know what to do. I just went to the doctor today because I have been miserable. I have been getting diarrhea at least once a day. I used to have problems with constipation. I'll get crampy first and then I have to go to the bathroom. I've also been gassy and bloated. I all of a sudden have eczema. I'm going to school right now and I am having problems concentrating and I just can't focus. I feel like I have a brain fog. I've also been having pain in my hips for almost a year and the doctor did x-rays and found nothing. I am tired all the time. I get up and feel exhausted. I eat breakfast and then half an hour later I've gotta go to the bathroom. After lunch I get a headache that gets worse throughout the day. Then after dinner I will get gassy and crampy and tired. I'm very irritable and not myself at all. I also have Hashimoto's Thyroiditis. I told my doctor everything and that I thought maybe I could have Celiac and he thinks it is irritable bowel syndrome and he doesn't like to run tests unless really necessary. I just had blood work done a couple weeks ago and I didn't have anemia so he thinks that I prob don't have Celiac, plus I'm overweight. The blood work also showed that my cholesterol was high which was annoying because a few months ago I started using ground turkey in place of hamburger, and turkey sausage in place of pork. He also suggested that I had mild depression and wanted to put me on an anti-depressant but I didn't feel like I really need that. I'm hesitant about taking anti-depressants. I just want to be able to think straight and get rid of the headaches. I'm supposed to go back in a couple of weeks to update him on how I feel. I'd like to go gluten free to see if that makes me feel better but I'm afraid if I do he'll end up wanting to test me for it and then it won't show up on any tests. Frustrated along with my irritability issues..it helps to vent on this board though. Sorry to go on about everything but I think you guys are probably the only ones who could understand.

[aikiducky]

Personally I think that you have enough symptoms of celiac that it would be worthwhile to do the blood tests. Why on earth doesn't your doctor want to do that, it's not the most expensive or invasive test in the world?? If you're female, would it be an idea to take a family member, preferably male, with you to the doctor and insist on the test? Unfortunately doctors often dismiss female patients more easily, that's why I'm suggesting this.

Being overweight is not an indication of not having celiac, plenty of people nowadays get diagnosed with celiac and are overweight. The doc is probably going on outdated information.

You're right that going gluten free before testing can skew the results.

Good luck, I hope you find your answers and start to feel better.

Pauliina

[Jestgar]

So he doesn't want to do a simple blood draw test but he's willing to make you take a mood altering drug? Have you considered switching doctors?

I just want to remind you that you don't need a doctor's diagnosis to not eat gluten.

[happygirl]

Find another doctor, and tell them that you want the full Celiac blood panel run. I am sorry that your doctor is overlooking the fact that Celiac is the most common autoimmune disorder, and yet 97% of American Celiacs don't know that they have it. The problem is not the patients, but the doctors---NIH just launched an awareness campaign about Celiac...for DOCTORS because they just don't know anything about it, and aren't testing for it. Its frustrating to all involved, but especially, the patients who suffer.

www.celiacdiseasecenter.columbia.edu is a great resource. Under the page for doctors, it has the list of bloodwork needed. Print it out and bring it with you.

Best of luck...I hope that you find some answers. Let us know what we can do to help.

[RiceGuy]

In addition to the fine suggestions other have made thus far, I'd suggest a magnesium supplement for a number of the symptoms you've mentioned. It won't mess up tests, doesn't need a doctors approval or monitoring, is cheap, and can practically work wonders (it has for me and others). Just be sure it specifies gluten-free on the label. There are pills, though I'd recommend a powder. Some brands that specify gluten-free are Source Naturals, NOW Foods, and Freeda. A few others might be safe as well, but most don't give much if any indication of possible allergens.

While awaiting blood work, I don't think it would mess up the results to have a few more gluten-free meals than you usually do. As I understand it, antibodies tend to stay in the system for awhile. If your symptoms lessen just from that small adjustment, it will give you more evidence that you're on the right track, and give you encouragement to go completely gluten-free.

I'd also remind the doctor that IBS is not a true diagnosis. The term "Syndrome" is given to conditions for which the cause is UNKNOWN. So basically, the doctor is merely saying that they don't know what the cause is!

[StrongerToday]

My dr. will tell you that IBS does exist, but it should be a "stress = stomach reaction" and NOT an every day occurance! When I went to him with almost identical symptoms you have, he said that most times chronic D is caused by a food intolerence. And I think he was right, it was very hard to go gluten-free at first but now I feel just so much better. Find someone who will listen to you, even if he doesn't know a lot about Celiac or gluten intolerence.

I agree with Jetsgar - you don't need anyone's approval to go gluten free!

[num1habsfan]

I think ALL doctors tell a person they have IBS when they dont know what else is wrong. Still get tested for Celiac. They still try to tell me its that even tho symptoms I'm having are too serious just to be IBS.

~ lisa ~

[sunshinen]

My advice: find a new doctor. In my opinion any doctor who goes straight to "IBS" and "depression" is on a path that isn't going to help you. They may have the best intentions (or he may just be catering to the demands of insurance companies who don't want to pay for the tests), but you don't deserve to go through life with these miserable symptoms. You deserve to find the real cause, and to find it, you need a doctor who is willing to do the tests and trust you as the patient that something just isn't right.

The only thing that came up low on my normal bloodwork was sodium. My cholesterol was high, even though I was practically a vegan.

Find a doctor who will do a celiac panel and test you for other food sensitivities. Really, it can change your life in all the right ways!

I found out from a chiropractor that I was sensitive to gluten before I knew what celiac was, but I wish I had the "gold standard." So I recommend at least trying to get the tests done first. If you cannot get anyone to do them, then definitely try the diet anyway.

[Ursa Major]

All your symptoms point to possible celiac disease, including the depression. I agree that if your doctor won't do the blood work, you need to find yourself a new doctor, who isn't as ignorant on celiac disease as this one.

Try to get another appointment as soon as possible, and insist on doing the tests for celiac disease. Not everybody with celiac disease has anemia and is losing weight. Those are just two possible symptoms. Since there are about 200 celiac disease symptoms, it is ridiculous to say you can't have it, because you don't have two of them.

[elye]

Yep, you need a new doctor. The one problem is this: the celiac panel can yield false negatives...and even the biopsy, the gold standard for diagnosis, can come up falsely negative by missing damaged areas of the small intestine. For many people, the only true diagnostic tool is the gluten-free diet. I'd be curious to know how many posters have had negative blood tests/biopsy but know they are intolerant or celiac due to big changes with the gluten-free diet.

[debmidge]

So he doesn't want to do a simple blood draw test but he's willing to make you take a mood altering drug? Have you considered switching doctors?

I just want to remind you that you don't need a doctor's diagnosis to not eat gluten.

......my thoughts exactly.....the antibody blood test is just as easy as a cholesterol test...and it should and could have been done when that was drawn. Time to find another doctor. See my husband's list under my name - we speak from experience.

[Felidae]

If you don't require a diagnosis, try going gluten-free for a few months and see if you feel any different.

[Swthrtpookie]

Thanks everybody for the great advice. I'm going to go back to my old doctor and see if he will help me. If that doesn't work then I'm just going to try the diet and see if I feel better. I don't want to cut out gluten yet though just in case he will run the tests. I really think it is a problem though. I had been eating gluten at every meal for the two days before I had gone to the doctor and I was so miserable the night before I saw the doctor I went to bed right after I put my kids to bed. I ate toast for breakfast yesterday, but that was all the gluten I had and I finally got rid of my headache at 6 last night. How much gluten do you think I need to eat to make sure it stays in my system? I really don't want to eat it at every meal because I felt so horrible. Thanks for all of your great advice I really appreciate it!!

[Nancym]

I think the equivalent of 4-6 slices of bread a day.

[darlindeb25]

I agree, a diagnosis of IBS is just a doctor's way of saying they are not sure what is wrong. My doctor, a very long time ago, told me that IBS stands for, "I Be Stumped". I was diagnosed with IBS 25 years ago, also, they said it could be nervous stomach, stress, etc. They didn't even try to pinpoint anything or run any tests. I was naive and believed them. We all know doctors are Gods!

The wonderful optomitrist I work for actually told me he thinks Celexa will take away my intolerances, even celiacs. Now I know better than to believe that. He is wonderful with eyes and I wouldn't trust anyone else with my eyes, yet he knows nothing about celiac disease. Any time I mention anything, he blames it on hormones. I suffer from dry eyes and he stood right there in front of me and said that dry eyes can be caused by auto-immune diesease, allergies, or hormonal levels and of course, he told me mine is hormonal.

As a celiac, I think we all must take our health issues into our own hands. We have to make the doctors listen!

[super-sally888]

Hi,

I had all the similar symptoms as you. Including unexplained joint pain. And I was obese. Six years ago I was told I had IBS and just decided I had to live with everything. And my thyroid continued to get worse over the years and still not feeling great (even aside from stomach issues).. even though I managed to get my weight down a reasonable amount through exercise and diet...

Ironically trying to eat a more 'healthy' diet, with more pasta (I was training for an ironman triathlon) brought things to a head with stomach problems way worse. But it was my friends who insisted I should try to find answers. I just go so used to not feeling well and stomach problems and had given up. After all, it was psychosomatic, wasn't it!!

I did not get an official diagnosis, but since cutting out gluten I am not having the same problems. Reflux also nearly gone. No more gas, no more bloating. I never realised that I could have a flat stomach! It does come back if I get gluten / cheat.

Thyroid problems and celiac, and other autoimmne problems often go hand in hand.

As others said, anyway, you don't need a prescription to go gluten free. However there are pluses and minuses to an official diagnosis so up to you.

Trust yourself. Listen to your body. More power to you. And don't give up on finding an acceptable solution for yourself.

Welcome and best wishes.

Sally

[super-sally888]

IBS = I'm Bl**&y Stupid. I don't know what's wrong with you and I can't be bothered finding out. IBS is the waste basket for any stomach problems that a dr. doesn't know the cause. Don't accept IBS as a diagnosis! Really!

[super-sally888]

Sorry, me again. Am a bit disjointed tonight.

Depression (not saying that you have it) can also be affected if your thryoid meds are not right. My stomach issues were also much when my thyroid was out and I needed to increase the meds.... just an ideas.

S

[Swthrtpookie]

Hi,

I had all the similar symptoms as you. Including unexplained joint pain. And I was obese. Six years ago I was told I had IBS and just decided I had to live with everything. And my thyroid continued to get worse over the years and still not feeling great (even aside from stomach issues).. even though I managed to get my weight down a reasonable amount through exercise and diet...

Ironically trying to eat a more 'healthy' diet, with more pasta (I was training for an ironman triathlon) brought things to a head with stomach problems way worse. But it was my friends who insisted I should try to find answers. I just go so used to not feeling well and stomach problems and had given up. After all, it was psychosomatic, wasn't it!!

I did not get an official diagnosis, but since cutting out gluten I am not having the same problems. Reflux also nearly gone. No more gas, no more bloating. I never realised that I could have a flat stomach! It does come back if I get gluten / cheat.

Thyroid problems and celiac, and other autoimmne problems often go hand in hand.

As others said, anyway, you don't need a prescription to go gluten free. However there are pluses and minuses to an official diagnosis so up to you.

Trust yourself. Listen to your body. More power to you. And don't give up on finding an acceptable solution for yourself.

Welcome and best wishes.

Sally

I feel a lot better to hear from someone having the same issues. It makes sense with my thyroid too because I have had to raise my thyroid medicine twice over the 4 1/2 years that I have had issues with it. If my other doctor won't run tests on me I'm just going gluten free. Thanks so much everyone I know you guys will provide the support I need to go gluten free without a diagnosis.

[Fiddle-Faddle]

. Thanks so much everyone I know you guys will provide the support I need to go gluten free without a diagnosis.

You may find that your thyroid dosage may need to be adjusted down after going gluten-free. My dosage had been raised 6 times in 4 years, but after going off gluten, my endo had to keep lowering the dosage. But I had to call in complaining of hyper symptoms to get her to do the bloodwork (usually, she only checks once a year unless I am calling in with symptoms).

If you are starving, sweaty, feel like your pulse is fast, and feel like your eyes are bugging out, these are probably signs of too much thyroid.

The gluten can cause your body to attack your thyroid in the first place, and can also keep you from absorbing nutrients--and your thyroid hormone pills!

Best of luck to ya~

P.S. I totally agree with the others about IBS. The B S stands for "bull s--t." Seriously, the S is for Syndrome, which means a collection of symptoms. Notice how the collection of symptoms for IBS is identical to those of celiac....

[Adelle]

Hello! And welcome. Others have probably suggested this (haven't read everyone's posts yet, brain foggy this am) but try the gluten-free diet!! My doc was also hesitant to test me (for the same reasons you said, actually). I went gluten-free anyway (he tested me later and I was still "borderline +". But who cares? On the diet (6mo's now yay!) I feel so much better!! I still have fibro and some other crappy stuff, but I feel sooooo much better!! If it really matters that you have an official dx, then u'll have to find a new doc or DEMAND a test (that's what I did). But if you are ok sans official stamp of celiac-ness, just try going gluten-free. IMHO what truly matters is how you feel.

Any gluten-free questions, ask away! People here know EVERYTHING!

[lonewolf]

You may find that your thyroid dosage may need to be adjusted down after going gluten-free.

Fiddle-Faddle is right. I've been fanatically gluten-free for almost a year and a half (after being "mostly" gluten-free for almost 10 years before that) and I just needed to reduce my thyroid dosage. I'm already on a fairly low dose to start. It's "normal" to have to keep upping your dosage every few years - my mom, sister, MIL and SIL have all had to keep upping theirs. I'm the only one gluten-free (and I think a couple of them should be) and the only one who isn't having troubles keeping their thyroid balanced.

As for the IBS diagnosis - it's bogus. I was diagnosed with Colitis and then IBS in college and suffered for over 12 years before finding out that it was food sensitivities that were causing my problems. You either need to insist that your doctor run some tests, find a new doctor, or just try the diet to see if it helps. You could be intolerant to gluten without being Celiac - so traditional tests might not tell you anything. A diet trial might give you all the information you need.

[Swthrtpookie]

Thanks everyone for the great advice. I have an appointment Thursday with my old doctor so hopefully he will be more open to testing me for celiac. I'm really lucky that my husband is being really supportive and is willing to try the gluten free diet with me when I start it. Now I just need to figure out what to feed us. I'm having a problem figuring out what to eat besides chicken and turkey because I'm also watching my cholesterol. It's going to be a fun adventure.

[Swthrtpookie]

I just wanted to update everyone on what was going on. I went to my old doctor yesterday and he is so much better at listening. He thinks I have Crohn's but he also tested me for Celiac. So after the bloodwork comes back on that he wants me to get a colonoscopy. Which I'm really not looking forward to doing. I'm finishing up my last semester in college so not sure where that will fit in my schedule to take the time to deal with a colonoscopy. I feel a lot better now that I have a doctor who will listen to me. I'm really hoping it is celiac and not crohn's though. At least I know a change in my diet will help celiac. Thanks for all of your great advice. This really is an awesome board and I'm glad I found it!!

[Judyin Philly]

HI

JUST FOUND THIS THREAD FOR THE FIRST TIME.

SO GLAD YOU POSTED TODAY ...NOT SURE I'M UP TO GIVING ADVICE TODAY AS I'VE BEEN THROUGH THE 'MENTAL EMOTIONAL MILL' THE PAST 3 WEEKS...MYSELF...TRYING TO FIND ANSWERS AFTER BEING gluten-free FOR ALMOST 2 YEARS...

ALL I CAN SAY IS I'M SO GLAD YOU HAVE THIS DR WHO LISTENED AND TESTED YOU FOR CELIAC.

i JUST KNOW WITH ALL THE SYMPTOMS AND "H THYROID' I WOULDN'T BE A BIT SURPISED WITH A POSITIVE ....

SO GLAD YOU KEPT LOOKING.

GOOD LUCK AND KEEP US POSTED.