Stuggling...am I Or Am I Not?

[Nesnem]

Hi to All!

I think this meet and greet is going to turn into a long post. Apologies in advance for the probable rambling:

I've been to this site many times as a guest, and only today have I become a member. Funny how now I choose to be a member when I have probably fallen off the wagon...

I know all the things that I should be doing, but have fallen into a deep pit that I can't seem to pull myself out of. I struggle with the 'am I, or am I not?'

A little background about me:

Fairly normal and healthy growing up- always on the thin side, but never underweight - never sick. Always had very itchy skin and reoccuring rashes on my legs in centralized regions that I always assumes was reactions to perfumed lotions. Nothing ever caused me to be alarmed.

Joined the military when I was 20 years. 2-3 years later while stationed overseas in Germany, I began to develop classic gluten-intolerant symptoms: painful distention to the point of looking 4+ months pregnant, slight occasional diarrhea (but I blamed heavy German foods), itchy rashes on my legs (same spot all the time) that never reacted to steroid creams (DH?), fatique/lethargy, etc. This lead to numerous tests: anemia tests, CBCs, thyroid tests, vitamin defieciences, electrolyte imbalances=all negative. In fact, my thyroid has been check 5-6 times during 5 years in military.

When the military docs couldn't diagnose me/ fix me with large amounts of meds (anywhere from ulcer medications to anti-depressant --- because they assumed it was psychosomatic) they sent me to German specialists to be hospitalized for 2 days. An upper endoscopy in 2003 informed me of my inflammed intestines (but a biopsy wasn't performed) and they did blood work. All my tests were sent to the military doctors for translation and nothing was ever explained to me other than they didn't see anything. I assumed I was 'fine' my medical standards and was on my own to suffer. It was then that I gave up on hospitals and looked for natural medicine. Two years later (and much suffering) I decided to get out of the military thinking the vaccinations were making me worse and that I was never going to get better. (I work for the military as a civilian now, so I still deal with military doctors and civilian specialists that I get referred out to.) I became vegetarian and began to feel better. I dabbled in RAW food diet and assumed it was all the German food that was making me sick back then.

Over the years my symptoms ebbed and flowed until late 2007. I hatd a tonsilectomy and suddenly my symptoms returned worse than ever. ( I know how surgery/stress can possibly awaken it). In late 2008 I tried to go gluten-free (out of curiosity and much research)for the first time following a detox (healthy version if wondering) and felt great, until I developed a DH type rash. It was then that I began to connect the dots and decided to get tested.

Before my test, I had been gluten free for 4-6 months and had completed a 16 day organic juice fast (in the hopes that it would give my intestines time to heal). I should say that this was based on my research and flipping through my military records. I noticed a positive IgA test (2003) from the German doctors, but it was never broken down as to what that meant - when I asked my new military doctor (2008) what it could mean, he stated that I was probably just fighting off an infection at that time.

Of course, I now realize that my 4-6 month gluten free diet and juice fast wasn't beneficial to any labs/tests. My tests were, of course, negative and I was sent to a great Internal Med specialist with over 45 years experience. Before he even tested me, he had already labeled me Celiac just based on my history. He performed bloodwork and a biopsy after I was told to ingest gluten for 2-3 weeks (not long enough he said, but thought it was worth a shot) and my tests were again negative. We discussed how tests don't always tell the truth and how if I was thriving on a gluten-free diet that it's very probable that I am, in fact, Celiac/gluten-intolerant.

I remained gluten-free for 2-3 months (at the same time I was vegetarian). It was easy to find gluten-free items here in SoCal, but I fell apart over time...social outings, feeling left out, feeling as if I was causing issues for those around me when I went out to restaurants with others. Grieving, I suppose. It was so easy to accidently 'gluten' myself, that I began to wonder if it was even worth the stress considering my tests were inconclusive. So, for the past 6 months, I have not been gluten-free. I have struggled with how I should be with this.

In the beginning it seemed to affect me: lots of itching (to the point of bleeding), very slight rashes, and mood swings, and mild distention. It seemed over time, the more gluten I ate, the less the symptoms. I am still always itchy, but my stomach isn't bad anymore. I never really had diarrhea, but I do notice constipation, but I also began eating meat again so I blame that. My moods on the other hand, I'm not sure what to make of them. I went to a therapist and he labeled me as having Social Anxiety Disorder - I don't see how I can become such a thing so quickly and what seems to be out of nowhere. My husband says that he has always noticed a difference in my moods/behavior when I would eat large amounts of gluten after being gluten-free for awhile. I can relate to that on some level, but there are times when I feel ok on gluten and it makes me wonder if the negative tests are telling the truth.

**Long story short, I guess, is how am I supposed to treat this? I know I can only decide this for myself, but I guess I just new a few shoulders to lean on... Am I really Celiac and/or gluten-intolerant??? I feel stuck. I try to be very health-oriented, but now I just don't know what to be about anymore. I feel like I can't win or lose this battle. It's now to the point, where when my husband explains to his family that I am not supposed to have gluten, I feel like I might be living a lie and so I sometimes feel more comfortable doing what everyone else does since my tests were negative. Also, I have an immense fear of becoming pregnant and not eating the right things, or eating the wrong thing for that matter. I'm 29, so it's getting closer to the time where we are ready to get pregnant. Sigh...so sorry for the long rant. How can you sum up something so frustrating in just a few sentences???

Thanks for reading and any input/opinions are appreciated!

[mushroom]

Hi, and welcome to the posting part of the forum, because you have obviously been around for a while.

I think that deep down you know what you should do, but you just want someone to tell you to do it because you don't really want to. A lot of people have problems following the diet without the diagnosis, because it does deprive you of some things and does get in the way of social interactions that revolve around glutenous food.

Most of your testing seems to have been done when you were gluten free and was therefore bound to be negative. It is not really clear what tests they ran in Germany. Are you gluten free at the moment or gluten-eating? If you have been eating gluten for at least 2-3 months I would suggest that you get retested now, or that you eat gluten for 2-3 months and then get tested since you do not seem to suffer too terribly while you are doing it. However, as you have probably learned here, it is possible to have false negative blood results, and even negative endoscopy, and still be celiac/gluten intolerant. If this were to happen, you would be left in the same quandary you are in at the moment.

It is pretty clear that you do improve on gluten free diet (and your husband verifies improved mood/behavior) when not eating gluten. You must think of the potential consequences if you continue to eat gluten. Although you do not have terrible overt symptoms, you still run the risks of developing all the autoimmune diseases associated with celiac, the intestinal cancers, the nervous system changes, diabetes, thyroid problems, etc., etc. Do you really want to take that risk? As you say, it will be your choice to make. But first off, you do have the choice of eating a full-on gluten diet for 2-3 months and getting a real test to see if you can get a positive result. That way there would be no question left in your mind, I would hope, of what you should do.

Good luck with your decision-making

[carsondcat]

Kia Ora

I concurr if you have been taking gluten for several months now, then get retested, and if the results are negative then you obviously have another issue with your health based around food....... Don't give up on the Drs though it took a change of country and a very switched on GP (sadly deseased now) who actually listened to me and really heard what I said and didn't label me as a hypochondriac (as others had) to send me for the tests and voila diagnosed after 40 years a Celiac. Keep plugging away until you get a definitive answer it can be a long road to diagnosis but worth the journey.

Good Luck...

[laurelfla]

I feel your pain! And I am glad you posted. We have all had our long posts on here at some point, I believe! This is such a great place to get support.

Everything mushroom said, I agree with. And I'd like to highlight, not everyone feels bad or continues to feel bad when eating gluten. Each person's body is different and the ways yours seems to respond or not may or may not tell you what you need to know.

You can win the battle! For sure. Just remember that it is YOUR health and if it happens to inconvenience anyone around you (whether it truly does, or you just feel it might) it's all worth it. You need to be healthy, and as you say, you need for that pregnancy/baby in the near future to be healthy. I don't know if this is helpful at all, just wanted to hopefully make you feel supported here!

[Nesnem]

Thank you all so much for your caring and your thoughts! I really do appreciate you taking the time. I have been away for awhile...soul-searching, I suppose. I have decided to go gluten-free (yet again) and I finally feel like I am empowered enough to stick with it.

I think your were spot on, Mushroom, when you said that you think I may need someone to tell me what to do. I've never been that type of person, but somehow I think that's what I've become with all of this. Thanks for helping to bring that to my attention. Somehow, it has made a difference.

I'm happy to say that I have been gluten-free for a little over 2 weeks now and I am feeling better with each day!

I do wonder if I am experiencing detox symptoms...???

I really can't compare this time to the last time I went gluten-free. During that time, I was doing a seasonal colon cleanse/detox so it seemed easy for me. This time around, I am very moody at times (angry), very tired (although I have been working out more, so...?) - I struggle to wake in the a.m. and I am sleeping late on the weekends. I usually avergae 7-8 hours a night but lately it can be up to 10 hrs. I usually go to bed at 10 p.m. but lately 8p.m. seems a lot more inviting.

I had quite a few chronic itch attacks, but no DH-like rash this time(thankfully!), but I did end up scratching until I drew blood and now I have lovely scars on my legs (sigh). I am experiencing A LOT of low back pain (something that always seemed to come and go with what I was eating, so maybe it's connected or coincidental?) My lips are peeling like crazy (every other day I am able to buff off a layer of skin - nothing new to me, just more so lately) I did make sure to check all of my lip glosses, etc. for gluten and they're clear.

Also, the best thing!... It seems that my 'Social Anxiety Disorder' is getting easier to deal with. I know miracles don't happen over night; but, recently, I was able to be surrounded by a group of people (11) and not want to leave immediately. This is a huge improvement from last month when I actually ended up not going to a wedding even though I had flown to another state ($$$) and my husband was the best man in it. Needless to say, it wasn't a good moment. Anyway, I am feeling better (mentally) with each day and I am even able to feel excitement for an upcoming social event that consists of hundreds of people! Part of me can't help but wonder if it's somehow a placebo effect of some sort, but I'm willing to bet it's connected. In any case, I'll take it!

I don't know about the detox- I've read similiar stories of detox, so maybe that's it. Feeling less and less moodier as days go by. My husband and I both are happy about that! Oh - speaking of which, I am VERY excited to say that he is going gluten-free with me as well! He doesn't want to lead me into temptation and has been a great support system. He always has been, but is taking the extra step for me and for us.

Thank you, carsondcat, for reminding me that it is a journey worth taking, although I think I will be foregoing any future tests. I may look into Enterolabs...?

And thank you, laurelfla. Your words have definitely been helpful and I do feel a great support here! I wasn't really sure about support forums before, but I can honestly see how helpful they can be.

Best to all!