What Now? A Little Frustrated...

[Juanitahoy]

Hi Everyone,

Thank you for taking the time to read my post. I had gotten my hopes up that maybe Celiac was the answer for me, but my TTG ab IGA came back negative (0.37 of a 0-15 range) They did not run my IGG, but it was run last year and was also negative. My rhumatologist stated that while he would run the blood test, he only felt it was necessary to procede with biopsy if the blood test was postive.

I have the following symptoms

Fibromyalgia

IBS

peripheral neuropathy

migraines

low vitamin D

low vitamin B12

Iron has always been very low but within normal range

my mother has Rhumatoid Arthritis (an autoimmune)

chronic fatigue

I am of Scots/ Irish decent

One of the first things they did when I was diagnosed with fibro was to put me on an elimination diet. I said that it didn't have an effect, because it didn't seem to help the pain. I did however feel more energized, and overall healthier. I was unable to find a trigger though. I was on the diet for approximately 1 month.

Most of the fibromyalgia drugs they have tried me on have caused MAJOR GI upset, so finding ones I can tolerate is almost impossible. Also I am unable to hold down most vitamin supplements.

Should I insist on other testing? Should I just go gluten-free? Any suggestions as far as what my next step should be would be appreciated.

Once again.. thank you for your time and support!

[Juanitahoy]

One other tidbit- One of the only treatments that has worked for me is trans dermal magnesium supplementation, so I guess my magnesium is low too. I guess there is no real way to test overall magnesium levels because it is stored in muscle as well as blood.

Thanks again everone!

[Jai]

Gluten free diet can't hurt unless you think that you may proceed with the biopsy eventually. If you feel better gluten free, you have your answer. Blood tests are not 100%! Trust me! Clinical studies are worth a LOT! What have you got to lose?

[mushroom]

Your doctor has run only one of the tests for celiac disease. There are others, especially the newer DGP which is very specific for celiac disease. It is possible to be negative on some tests and positive on others. The panel consists of the following:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

The last, the total serum IgA is run as a control to make sure that you are a normal producer of antibodies. If this reading is low, the IgA results are invalid and they need to run the IgG versions of all lthe tests.

I would seek further testing, especially the DGP IgA and IgG. Your symptoms are all classic celiac symptoms and I would be very surprised if you did not have it. However, even if further blood testing and an endo with biopsy come out negative, I would still go on the gluten free diet because I believe you would see a major remission in symptoms.

And by the way, welcome to the forum. Feel free to ask whatever questions come up.

[eatmeat4good]

Welcome!

I too, was diagnosed with Fibromyalgia, Scots/Irish descent, and right down the line of your other symptoms too. I cannot help you with the testing, but I can encourage you to try being gluten free because I am 90% better than I was a year ago and the only treatment has been being gluten free. I couldn't bear to do the testing because I had lost 7 years sitting on the couch or laying in bed with Fibromyalgia, Chronic Migraines, Depression, Anxiety, muscle pain and weakness and bone pain. When I found Celiac.com I was absolutely certain this was my problem. Within 2 weeks of being gluten free I knew it was true. It has taken a year of recovery, but I am able to function now and work. Whereas before I was unable to walk across the street without excrutiating pain, uncoordination, and after doing any physical activity I would have to rest and sleep for a week. I can tell you that all of this has gone away for me in the last year. I work, cook, clean, and I do not ever get migraines unless I accidentally get some trace gluten. I suspect there are many who are diagnosed with Fibromyalgia and IBS who really have Celiac/Gluten Intolerance. Once I found there might be a solution that was well within my reach and in my own hands...I couldn't bear to put another morsel of gluten in my mouth. I have never regretted that decision. However, you will have to decide how important testing is to you. I had Rheumatologists, Dermatologists (for DH, the skin form of Celiac) only they didn't recognize that is what it was, so consequently I was medicated wit antibiotics, anti-fungals, Lyrica, Flexaril, and Dilaudid for the pain. I am no longer on any medication. I have Dr.'s that want to see the formal testing done now. After the fact. I sought help for 7 years and no one suggested the tests. So I am very pleased that eating meat and vegetables and giving my gut time to heal has resolved every single on of those symptoms I listed above. The only issue lingering is Hashimotos' from long-term undiagnosed Celiac, but I can live with that.

I just wanted to write to encourage you that your suspicions may be correct. I was miserable and very ill. I hope you can determine if being gluten free will help you with all of those symptoms whether it is with a Dr.'s diagnosis or your own. You deserve to feel better and though it may not solve everything you list, it certainly did for me and I wouldn't want you to miss out on how wonderful it feels to be free of all of those forms of pain. When I see someone diagnosed with Fibromyalgia I just have to share my experience because it was really awful and the solution was so damned simple. I'm very grateful for my health and wish for you to have the same. People probably get tired of my repeating my story, but it is so maddening to me that Dr.'s are missing this diagnosis and people are losing whole years of their lives because of it.

Do ask for the tests Mushroom recommended to you. But if you do not get cooperation or a formal diagnosis, go ahead and try the gluten-free diet. You will know fairly soon if it is effective for you.

From on Scots/Irish to another:

God grant me the Serenity to accept the things I cannot change,

Courage to change the things I can,

And the Wisdom to know the difference.

[jswog]

God grant me the Serenity to accept the things I cannot change,

Courage to change the things I can,

And the Wisdom to know the difference.

Totally OT, but have you read the *entire* serenity prayer? You can find it on line and, personally, I find the words to be much more moving when put in the entire context.

Jen

[Juanitahoy]

Thanks so much everyone for the information and support. Although being celiac isn't easy, I think it would be easier than dealing with these symptoms and the meds (and all their side effects). I just recieved an e-mail from my rhumatologist and although he isnt' willing to do any more testing, he is willing to send me to see a GI specialist if I would like. Hopefully I won't have to wait months to see one.

[175comet]

I too am Irish decent and have been dealing with neurological symptoms (numbness, muscle pain, twitches) without a diagnosis. My GP thought I had Multiple Sclerosis but all the tests came back negative. Negative also for Lupus, Lyme, Neurosyphllis, etc..., It only took a 6 month wait to see the neurologist to confirm this!! She sent me for the celiac panel which also came back negative. Now, I have to wait another 9 months to see a sensory neurologist.

In the meantime I decided to see a naturopath to get my diet on track. The diet is free of sugar, gluten and dairy. I've only be on the diet for 3 weeks but am feeling better. However, I did just learn though, that you have to be EXTREMELY careful about being gluten free. I don't know for sure if gluten is the culprit, but I ate some Quaker Oatmeal on Saturday and my whole body went numb (legs, arms and right down my throat). And my stomach was completely distended. Later I read online that Quaker Oats should not be considered gluten free due to contamination issues. I had the same reaction when I ate packaged flavoured rice which also had an ingredient which is not gluten free. So you have to be REALLY careful that you are eliminating gluten to test this out.

Perhaps if we have neurological symptoms we are super sensitve to even small amounts of gluten. I say do the elimination diet to find out for sure. But do it right!!! You have nothing to lose. At best, you get healthier which is going to help out whatever symptoms you have anyway.

[Juanitahoy]

Update- So I have an appointment with Gastroenterology in two weeks! I'm very excited that they were able to see me sooner rather than later, because there is a 4-6 week wait for an appointment, but they were able to squeeze me in sooner.

In the mean time, for the last week I have been eating as much gluten as I can find, and I'm MISERABLE! I have constant indigestion, bloating, and some off and on nausea after eating, and constipation of course. Now today I am starting to break out in hives. I'm red and blotchy all over, and itchy, bad enough for co-workers to comment that I don't look very good. It's strange that I've never had these things until I started loading up on gluten.

Not looking forward to having these symptoms continue for two weeks, but I think it's better to suffer through so that the doctor can see the effects.

[Juanitahoy]

Any ideas how to relieve this feeling of fullness in my stomach? I feel like I have swallowed a balloon. I am trying not to take too many meds to help my symptoms because I want to be as reactive as possible when I see the gastroenterologist next week. I'm thinking peppermint tea?

Feeling yucky, but fingers crossed that this will lead to an answer! =)

[AVR1962]

Any ideas how to relieve this feeling of fullness in my stomach? I feel like I have swallowed a balloon. I am trying not to take too many meds to help my symptoms because I want to be as reactive as possible when I see the gastroenterologist next week. I'm thinking peppermint tea?

Feeling yucky, but fingers crossed that this will lead to an answer! =)

Gas-X, water and walking

[Juanitahoy]

Yeah... I think I should buy stock in gas-x! Thanks for pointing out water, I definately haven't been drinking enough (which is unusual for me). After this experiance, I am definately going gluten-free after the testing ordeal is all done. I don't care if it is negative...

Anyone have any experiance with amytriptoline? I am on that for my fibromyalgia, and although I have been on it before with good results, I am having some difficulty with it this time. I can't seem to stay awake!

I hope everyone is having a good day! And I'm just happy I'm one day closer to my doctor's appointment.

[MotoMommy]

What about milk? I have been wheat/gluten and dairy free for two weeks now. (Still not well but I'm not giving up.) I have all the same symptoms as you. My gastroenterologist had suggested I remove the dairy as well.

Only problem is that if we get better, we won't know if it was the wheat/gluten or the dairy right off the bat. I read that many people with Celiac have trouble digesting dairy as well. But once you heal, you may be able to reintroduce the dairy. Well, that's the route I'm trying at the moment.

Blessings to you,

Sonja

[Juanitahoy]

Thanks Sonja,

I will probably cut out dairy as well when I cut out gluten at least for the first little while. Right now I'm trying to eat LOTS of gluten so that I'm over prepared for the testing. I want my body to be reacting as much as possible when I go to the doctor next week.

I am actually amazed how much of a difference it has made to purposely eat alot of gluten. I've been feeling pretty gross...

I'm trying not to take too many anti-inflammatory, anti-histamine, or anything else like that, since I have heard that those can supress reactions enough to cause a false negative.

Although it's not the same, I have a co-worker that is allergic to her own progesterone (she goes into an anaphalactic reaction every time she ovulates). Her allergy went undiagnosed for a long time because of the things she was taking made the tests come back negative.

I've been struggling with fibromyalgia for about 10 years now, and have only been diagnosed for 2. I would like this celiac testing to be as short a process as possible.

[nora-n]

Amitriptyline--you have to keep taking it, then the sleepiness should go away after a while. If you start and stop and start again all the time you get sleepy.

[Juanitahoy]

That much I do know.. but thanks anyway nora_n! I was on it about a year ago for a few months and it stopped working, so they took me off of it, but now they want to try again. It's a bigger dose this time, and although I am good about taking it every night, the fatigue doesn't seem to be going away like it did before. It's been about a month...

[MotoMommy]

I am actually amazed how much of a difference it has made to purposely eat alot of gluten. I've been feeling pretty gross...

Your post made me chuckle...just the visual of binging on gluten on purpose.

I hope the next week goes by fast for you so that you can get through the testing and then get back to feeling better! Good luck.

[nora-n]

I must admit I never tried large doses of amitriptyline! But the side effects are noticeable after startup and when one starts up again.

I read on an pain forum too, and several people there have good help from amitriptyline.

And some fibromyalgia patients.

Both of these groups are typically on larger doses.

[Juanitahoy]

So the big day is tomorrow! I am finally going to see the Gastroenterologist. Any advice? Should I prepare a list of symptoms? Any questions I should be sure to ask? I'm not sure what to expect, but I'm excited to get this over with! =)