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alr127

How To Deal Emotionally

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First time posting here, hoping to get advice and just sort of find a safe place to vent my concerns.

 

I've been gluten free for over a year with a few slip ups here and there. For about the past 2 months, I've been having lower/upper abdominal pain. Initially, I went to my ob/gyn since I had a cyst on my fallopian tube (when I was pregnant and had to have surgery for it-- this pain was below the belly button), but he couldn't find anything abnormal on the transvaginal ultrasound. Got a full abdominal ultrasound done, but, again, it came up normal aside from a small kidney stone (had a larger one during second pregnancy as well).

 

My GP sent me to a gastroenterologist who took my history. Since it was about 6 weeks since I could recall the pain starting, he wants to do an endoscopy (came back negative for h. pylori stool test, btw) but said in passing "I don't think it's celiac." I replied that I was gluten free in passing and he did a bit of a double take. He wants to do a biopsy for celiac since he's already going to be doing the endoscopy and told me to get back on gluten.

 

Here's the first thing-- I feel like, aside from this doctor, people think I'm just making things up or that I'm a hypochondriac...and, who knows, maybe even he thinks that! I feel like I have to defend why I'm even getting this test done, even though the doctor wants to do it, I didn't have to push for it. How do you even deal with that? I've only recently heard my husband say he supports being gluten free (and that's saying a lot for the guy who is a pasta addict).

 

Secondly, I've had very obvious symptoms of stomach pains, diarrhea, dehydration, constipation, and painful gas and bloating for years (ever since I was a little girl-- I'm in my early 30s now), but I'm finding I also have been dealing with what I thought was "normal" and realizing it might not have been, things I hadn't connected with my gut health, but could possibly be-- fainting spells (dehydration-related?), itchy ears, joint/bone pain, headaches, brain fog, the feeling like I'm walking through sand/detached from myself if that makes sense, what I would call PPD (which cleared up after I went gluten free postpartum, though I probably should have seen a professional for that), lethargy/fatigue, insomnia, mystery skin rash behind my knees when I was younger but it seems to now be on my face sometimes. One of the things that trips me up is that I've always been overweight (though I lost weight well off gluten/didn't gain much with my second pregnancy and recovered much faster), so I never had the underweight/malnourished appearance that I guess some doctors are looking for. Could these possibly be related? I guess I could ask the doctor, but I think he already thinks I'm crazy, and google tells you pretty much anything you want it to tell you.

 

I don't really know where I'm going with all this. I sort of just needed a place to air my grievances, especially now that I'm doing this gluten challenge and it's gotten difficult today (feeling fatigued and crying and now I can't sleep/up with bad heartburn). Who knows, it may not even be gluten/wheat/food-related, I may just be imagining things. But, for now, perhaps someone else has gone through what I'm dealing with and maybe let me know how they got through it.

 

Thanks!

 

 

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You express this so well.  I have had many of the same thoughts since I went gluten free.  I hope you will get a definite diagnosis.  Brain fog and fatigue were my most dreaded and profound symptoms.  My immediate family had trouble believing me and my doctors.  They also came around and said that I did need to be gluten free.  I didn't have much GI stuff until I went gluten free and my reactions changed.  I don't think the symptoms are all in the head.  Please try to overlook the careless things people say.  Your symptoms are not normal.  Hey, I use to think brain fog was normal too, but one day it went away and then I knew that I had it 30 years!  Now, if I get it, I won't stand for it, I have got to figure out what is wrong and rest in the meanwhile.

 

How to handle it emotionally.  First off when you are gluten challenging it could be rough.  I didn't do the gluten challenge  myself since it was obvious to me that gluten was detrimental to me.  Make sure to realize it will past.  If I accidently get gluten I just remember what my reaction is like and tell myself that in about 4 days, I will be starting to feel better.  You may have to start with weeks for a challenge.  Extra rest you will need during this time, but after you go gluten free, you will be getting better.  You have walked quite a few years the wrong way on your gluten path.  Now, you will walk somewhat farther and after that you can turn around.  You will hit twists and bumps along the way, but you'll be headed in the right direction.

 

Prayer, songs of hope helped to get me through.  I wish you health in your recovery.  Remember that not everyone will understand your struggle and that they will say things that hurt.  Just do what you have to do and bear with their carelessness.  For all you know they are dealing with years of brain fog and fatigue!

 

Dee

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At least your doctor was savvy enough to know that if you had been off gluten that you need to get back on for testing!

I know it is hard, but if you can complete the challenge, you might have a definitive answer. Wouldn't it be great for your family? Wouldn't it be great not to be considered a hypochondriac?

Good luck and take care! I am cheering for you!

P.S. I was formally diagnosed, but my husband, who has been gluten free for 13 years, has not. He would be the first to say that I have had a lot more support from medical and family with a formal diagnosis.

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Bright side: this GI seems to be thorough and wants to eliminate possibilities by putting you through a gluten challenge. How long do you have to do it for? 

 

Take comfort in the fact that this is a "gauntlet" you have to pass through but you know how long it's going to take (hopefully not long!) You'll benefit and feel relief from having a thorough diagnosis, eliminating apparent impossibilities and highlighting likelihoods.

 

I'm in a somewhat similar position to you, but I'm looking at months of waiting before I can even see a GI. So for what it's worth, I think you're in a fortunate place with a doctor who is ready to work with you to find some answers. The worst thing IMO is to wait with uncertainty—even worse than suffering GI symptoms. So hooray for progress forward in learning how to feel better!

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