What Is Wrong With Me?

[mikehall117]

Hi. I am new here and would like to share my concerns about my health with you in the hope that someone might be able to give me some advice. I am almost certain I have some form of problem related to gluten and have had for a very long time. I had the blood tests a couple of years ago but they came back negative. I have been trying to identify if I am merely intolerant or have celiac disease and would like to know what people make of my symptoms. I am going to be quite thorough so I apologise for the huge amount of text!

I am male and 33 years old. I first realised that there may be a problem when I did the Atkins diet a few years ago (2003). For years I had been plagued with a wide range of health problem which all cleared up when I started dieting! Weight gain was one issue however the real problem ones have been:

Migraine

[gfb1]

this brings up an interesting point... if you are drinking beer, you are NOT gluten-free!!

budweiser makes a beer called Redbridge -- made entirely from sorghum.

Open Original Shared Link

it's not bad (much better than rice beers, imho) and my brother-in-law's are eternally grateful to anheuser/busch...

[elonwy]

Except for the mouth Ulcers, you're pretty much word for word my symptoms before gluten free. If you get a *good* GI, then they should listen to the results of diet challenge, not just dismiss diagnosis with the results of one blood test.

That being said, I don't know that two weeks is long enough for a true challenge. I felt better almost immediately after going gluten free, but it took longer than two weeks to ferret out the hidden gluten and get to 100% gluten free, at which point the weirder side effects like migraines and insomnia started to get better. Not what you want to hear, I know. But to me it definitely sounds like you've got issues with gluten, Celiac or no. It may seem like a huge PITA to give up all things gluten-y, but feeling good more than makes up for it, IMHO.

[mikehall117]

Hi. Thanks for the replies. So how long do you think I should go gluten-free before I can start to see the long-term benefits such as reduced fatigue, migraines etc? I was planning on two weeks but if it takes 6 months I'll gladly do it as I really want to put and end to this. It has made me miserable for too long.

After I have abstained from gluten would I need to introduce gluten rich foods for a while and record the effects? I am keeping a diet diary and recording all my symptoms on a scale of 1-10 each day to try and monitor how things improve. I want to make sure I have indisputable evidence that I am gluten intolerant before I go back to my doctor as I need to be able to challenge the negative blood test result.

[Rebecca's mom]

If you don't want to do a gluten challenge, then you may be able to ask your doctor to run a genetic test. I don't know what this test is "called" at other labs, but Quest Diagnostics calls it "HLA Typing for Celiac Disease". Since this tests to see if you carry the GENETIC marker for Celiac Disease, you don't have to have gluten in your system.

Given everything that you have described, I would be VERY surprised if you DON'T test positive for celiac disease! Incidentally, some people test negative on the antibody test, yet still have an "active" case of celiac disease. I happened to have Dermatitis Herpetiformis, but because it didn't constantly itch, my dermatologist didn't think I had it. I just found out last week that I carry one of the genes for celiac disease - I've been on a gluten-free diet since last April, though, because our daughter was diagnosed with it.

The best part has been losing 38 pounds without even trying (well, that and feeling SO much better!).......

Teresa Koch

[CeliBelli]

I agree, I will be stunned if you are not diagnosed with celiac disease. My story is also very similar to yours. The bad news is you will need to keep eating gluten until you can get tested again. I highly recommend you do this, as you will want an official medical diagnosis in hand if you can get one. You may need this dealing with doctors and hospitals in the future, as they will not give credibility to someone who self-diagnoses.

There are new anti-body tests on the market now, as well as the new genetics tests, which have higher levels of reliability and accuracy than what you likely had a few years ago. I had the full battery of tests, and tested negative on the older style tests, but quite positive on the newer tests and the genetics. You will also want to have the endoscopy done by a good gastroenterologist with experience treating celiac patients.

You need to keep eating (and drinking) gluten until all of these tests are complete so they test you in a full blown reaction, since your antibody level will begin to drop rapidly once you go completely off gluten. Don't put any of this off. The sooner you get fully tested, the sooner you can begin to get well.

Good luck!

[mikehall117]

It's so reassuring to read your responses! This is the first time anyone has considered all of my symptoms and it's nice to know I am not alone. I have booked myself in to see a doctor next week. I have decided that am going to stick to a gluten free diet for a week or two more and keep track of my symptoms. Hopefully I will see everything clear up. Even after just 48 hours I am feeling so much better and have a huge energy boost today! Once I have spoken to the doc I may need to switch to a gluten diet again. The UK Coeliac Charity recommended that I eat a minimum of 4 slices of bread per day for 6 weeks prior to any blood tests so if the doctor agrees this is what I will do.

[prayin4achange]

Wow I also have a lot of the same symtoms, but no doctor will listen to me either about celiac. I think I will just beg someone to help me order the genetic test and see how that goes. I really hope u figure this all out. Please update us on everything. We are all behind u and want to support you through this time. Ive realized only people who have been through similar problems really understand.

May God bless you!

jenn

[mikehall117]

Hi Jenn. Thanks for the positive message.

I found that by writing everything down and analysing all of my symptoms I have been able to get a great deal of evidence together to present to my doctor. It's the first time I have done an exercise like this and now I can see it in black and white it all seems so very obvious. I don't know how it will be received, however I know that there is no way I can realistically articulate everything on my list in the 10 minutes I will have in the surgery. Therefore I am mailing everything I have written to my doctor today so that hopefully they will have read through it in advance and will have a clear picture of my situation. I am also seeing a doctor I have never seen before in the hope that they will offer a fresh perspective.

I know what you mean about others not understanding. I have tried to talk to my wife about this and she hasn't been very receptive of the idea. I don't think she really understands just what I have been through and how all of my symptoms are unquestionably linked to my diet. It must be quite difficult for someone to understand without fully comprehending the biology behind it. It's also difficult to link concepts such as tiredness and depression with things such as a skin rash and headaches when they appear to be so different from each other.

My appointment is next Tuesday so I will let you know what happens.

Best wishes, Mike.

[mikehall117]

I just thought I

[OptimisticMom42]

Hello,

I just wanted to note that I have seen several posts on the net by people like you and I who went on the atkins diet and then were unable to go back to eating their old favorites. Have you seen an allergist? You may have intolerances beyond gluten. For many dairy, soy and nearly all grains are not tolerated well.

Best wishes,

OptimisticMom42

[TES]

Hi. I am new here and would like to share my concerns about my health with you in the hope that someone might be able to give me some advice. I am almost certain I have some form of problem related to gluten and have had for a very long time. I had the blood tests a couple of years ago but they came back negative. I have been trying to identify if I am merely intolerant or have celiac disease and would like to know what people make of my symptoms. I am going to be quite thorough so I apologise for the huge amount of text!

I am male and 33 years old. I first realised that there may be a problem when I did the Atkins diet a few years ago (2003). For years I had been plagued with a wide range of health problem which all cleared up when I started dieting! Weight gain was one issue however the real problem ones have been:

Migraine

[mikehall117]

Hi OptimisticMum42. Thanks for the advice. A few weeks ago I undertook the Atkins diet again; however I continued to have dairy products. I certainly didn't notice any ill effects. I am still consuming dairy and other produce at present and I have reintroduced all other food groups and am now only eliminating Gluten. With the exception of a couple of mistakes 10 days ago (which made me quite ill) I have been Gluten free for almost 7 weeks now and I am feeling very well indeed. I will continue to monitor myself for any ill effects and hopefully my diet diary will help me identify where I may have problems. I am getting medical advice next week so I should be able to get a plan of action to help me identify what has been giving me all these problems.

[OptimisticMom42]

Hello again,

Glad to hear that you are feeling better. Sounds like you are using a combination of the atkins diet and the elimination diet to figure it all out. That was the advice my dr. gave me even after the allergy test so you've probably saved yourself some time and money. However, I would still try to find a Dr. who is willing to look at your notes and offer testing and diagnosis. It's good that you know what's best for you (here I have to deviate from optimism and suggest caution) but if ever you were unable to speak for yourself your medical records need to speak for you. Having worked in a state run facility I know how important this is.

Best wishes,

OptimisticMom42