Doctors Still Not Diagnosing Me, Need Advice!

[Kirstie]

I've been struggling with so many symptoms the past few years. Constipation, dizziness, extreme fatigue, vomiting, constantly being cold, being very pale, constant bloating, mouth ulcers and sometimes even fainting. I've seen so many doctors (almost 10) but NONE have helped me at all.

I began a gluten free diet 2 weeks ago just to see what would happen, and I finally feel better! I still felt brain fog and fatigue for the first week, but now thats gone! I have energy, I'm sleeping better, my constipation has improved and I no longer constantly feel nauseas after every meal and I'm no longer vomiting. This has been a first in 3 years!

I went to a doctor today and she told me to begin a gluten diet again, and have blood tests in a couple of weeks. She believes I have IBS not Coeliac or a gluten intolerance. She picked out the symptoms that verified IBS and ignored all of my others.

Now I don't know what to do! Do I eat gluten again (even though I know it poisons my body and makes me ill) just to have blood tests done to look for IBS. Or do I stick to my gluten free diet, feel better but remain undiagnosed. (Even if the doctors are trying to diagnose me with IBS)

Any advice would be so appreciated! I am 19 years old but I feel 90! I'm so tired of being run down, exhausted and ill!

[BabsV]

Do you need the actual diagnosis for any reason? Work or school or health insurance/care? Many people who go gluten-free and have their health improve are happy to remain 'officially' undiagnosed. On the flip side, do you need that piece of paper from a physician stating that you have Celiac? Or non-Celiac Gluten Intolerance? There are those who have negative blood tests who still have a positive biopsy. This is a call you are going to have to make. Due to my husband's job (he's in the U.S. Foreign Service and the whole family has to have medical clearance) I HAD to jump through all the hoops and have blood tests and biopsy -- both of which were positive.

[cavernio]

Get the bloodwork done, but make sure you have your appointment booked so you know when it is.

ASAIK, there's no blood test for IBS, seeing as they don't even know what causes IBS, but there is definitely bloodtests for celiac disease. Plus she's telling you to go back on gluten, which would be necessary for positive bloodwork for celiac disease. Does this make you feel any better about your doctor and what she's asking, knowing that she's likely testing you for celiac and not IBS?

I JUST last night made my own decision to eat gluten for a biopsy of my intestines. see thread

Keep in mind that your bloodwork might still come back negative, yet you still have the disease. If that happens and you still want an official diagnosis, insist on getting a biopsy done. You will have to continue eating gluten of course.

It's ultimately up to you whether you think an official diagnosis is something you want. The downside to it is having to eat gluten to get it.

[birdie22]

Personally, if the docs willing to do blood tests and I'd only been gluten-free for 2 weeks, I'd go back on gluten and get tested and I'd make sure the doc runs a full celiac panel not just tTg or EMA (ask for total IGA and dgp too). Then, if tests come back negative I'd go gluten-free for a few months (strictly and consistently)and take copious notes about what I eat, when, and symptoms. Actually, I'd be taking copious notes now too with gluten added back in. Then show that info to the doc.

I tested neg. But, I was able to demonstrate to my doc how much worse my symptoms were with gluten (I showed her tallies of how many days of headaches, bloating, canker sores, w/ gluten vs w/out gluten). That was enough for her to change my "diagnosis" from IBS to NCGS.

[sandsurfgirl]

This is the quandary that celiacs face all the time with ignorant doctors. IBS is a junk diagnosis. It's what all of us were diagnosed with. My GI doc told me there was no way I had celiac and it was IBS. He talked me out of testing and I suffered for 8 long years. Then an ER doc told me it was celiac and to get tested. My blood tests were through the roof.

I don't know what to tell you to do. That doctor sounds like yet another one who doesn't really know celiac. Gluten makes you sick. You have classic celiac symptoms. Why would she say it's not likely celiac? Kickbacks from the drug company to get you to take that IBS drug? A prejudice against celiac diagnosis?

To get tested you must be eating a ton of gluten. So you have to weigh the benefits versus the risks. Is it that crucial you have an official diagnosis from this doctor? If it is, then you need to eat the gluten, take copious notes to prove it to her and get the blood done. Trouble is, those tests are not that sensitive so you might still come up negative.

[Ninja]

If it were me, I would also go back on gluten if I had only been off of it for 2 weeks. I'm currently in a situation where I've been gluten-free for almost 4 months – I react much worse to smaller amounts of gluten now than I did when I was 2 weeks out. I now realize that I need a diagnosis a) because I'd like to know if it is Celiac and b ) I need one so I will stop doubting myself c) for college d) for future (and current) family members.

Regardless, try to find doctors that are willing to work with you. The tests for Celiac will continue to improve, but they aren't always accurate in every case – doctors who acknowledge that are the best (and most helpful, I've found!). However, if you start eating it and you suddenly realize you won't be able to make it through the challenge, just stop – but make sure to record all of your symptoms, before, during and after the challenge. :-)

[sandsurfgirl]

  On 5/18/2012 at 2:58 PM, Aerial said:

If it were me, I would also go back on gluten if I had only been off of it for 2 weeks. I'm currently in a situation where I've been gluten-free for almost 4 months

[Takala]

Don't bother going through "The Ritual" with this doctor, if she is already pushing the IBS diagnosis. Find one who is versed (knowledgable) in celiac and gluten intolerance without the specific celiac diagnosis, or will at least humor you. My current primary care physician falls into this category, because I had such a bad experience with other doctors who were insisting that my obvious damage must have ... no causes, and he has seen the test results of scans showing that I do indeed have bone loss, c- spine damage, arthritis, and brain damage, and I have recovered from all the other garbage that was affecting me to such an extent. .

I have no sympathy for doctors who ignore what the patient tells them. I had the neurological form, which was causing me much havoc, I was literally dragging one leg because I had no feeling in it, I could not focus my eyes and was losing color vision in one of them, I had numbness in my arms and hands, chronic kidney problems (and negative on all blood tests, the lupus tests, the MS tests, and the CRP inflammation tests) and was told I was making it up by more than one crackpot when I said my symptoms were diet related.

The ONLY reason I am off gluten today, is that there was a random comment left on an unrelated internet forum by someone many years ago, who said her sister's arthritis, (the same rare kind that I had) really flared up if she went off her diet and ate a lot of bread, (???!!!) which started me researching, and experimenting on myself. I found forums where people were discussing this, and the SCDiet, besides the technical research by Dr. Hadjivassiliou. They were ahead of the curve, so to speak.

Secondly, you MUST get test results in written form. I had test results withheld. I was NOT a happy camper when I found that out. Since you have been off gluten such a short time, you should go on it and get a complete celiac blood panel done. Then you can go from there to see what the next step is. If you test negative, you will then by thrown into the "garbage bin" diagnosis category by the "IBS-Happy doctors. But there ARE gluten intolerant people who test negative. See "Dr. Fasano." Since your self- testing gluten challenge is positive for symptom relief, you will then have to figure out whether to try to test further by biopsy, or finally go gluten free for your health.

As far as I am concerned, there is no such thing as "IBS" and "Fibro," these are just the bull**** catchall phrases they use when they consider you a head case who so neurotic you are making yourself sick.

[Googles]

As you are 19 I would suggest going back on gluten (as soon as possible) and get the testing. If you are in college or want to continue school, you will need the official diagnosis for accommodations. There are also work places that may require this also. You don't know where you are going to end up, so it would be good to have this.

[Christine0125]

I only did a gluten trial for 2 weeks for bloodwork after a short gluten-free period. I am guessing if its celiac just a short gluten trial may give u the answers you need. I know its hard yo go back once you start feeling better.