Jump to content



   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

I Don't Know What's Wrong


  • Please log in to reply
4 replies to this topic

#1 Black Jax

Black Jax

    New Community Member

  • Members
  • Pip
  • 2 posts

Posted 29 November 2011 - 07:06 AM

Greetings,
I am a 25 year old man suffering from various digestive and mental symptoms. I've had chronic constipation and diarrhea for at least 14 years (I can't remember how long). It's worth mentioning that the diarrhea was torture. I had severe bloating, abdominal cramps, gas, but it's the diarrhea that I remember. I also suffered from severe anxiety and depression with the onset of puberty, culminating in my withdrawal from school at the age of 16. I underwent several pharmaceutical treatments for my anxiety and depression but neither were successfully treated.

At the age of 18, I finally started to address my digestive problems with my PCP. With a negative results on the blood tests for celiac disease, hypothyroidism, etc, my PCP 'diagnosed' me with IBS -- a diagnosis I haven't been able to alter since. I take a triple dose of metamucil and eat a cup of pro-biotic yogurt every morning with my breakfast, which more or less manages my symptoms. I still have the occasional bout of constipation and diarrhea, but aside from the bloating and gas it's relatively benign. However, I usually have bits of 'something' in my stool that looks like little chunks of fat. I thought maybe it was the fiber causing this by making things move through my system to fast, but it seems to have little or nothing to do with how long I've spent between bowel movements.

I still struggle with anxiety and depression along with severe brain fog and debilitating apathy, despite having a strong and supportive circle of friends and a fantastic girlfriend of 13 months. I feel measurably better when I get a restful nine hours of sleep the night before, but attaining that goal is rare (despite undergoing pharmaceutical programs and cognitive behavioral therapy to address restless sleep). The brain fog makes me feel like my brain never got out of bed -- like it's still there, snuggled up in its little comforter inside my head and resting on a cloud. Thinking takes so much effort, and I have a very hard time concentrating and focusing on intellectual stimuli for long before before my brain starts rolling over in its bed to make me stop bothering it.

I can't remember having problems with rashes, but I have had keratosis pilaris rubra faceii (google it) for as long as I can remember. In addition, I get a ton of whiteheads on my back and other very localized areas -- it's like my body is constantly producing pus and oil to fill up as many pores as it can. Lovely, I know. My dermatologist prescribed a ton of topical remedies for these problems, and I've tried several internet solutions as well, all to no avail.

I'm sick. But more than that, I'm sick of being sick. I feel like I'm floating in the middle of the ocean and it would be all too easy to just give in and be absorbed by it, but there's also a part of me that can't accept that I cannot change/fix my problems. I realize that in this entire essay of a post I have failed to ask any questions, but the truth is that I no longer know where to start. I just need help, and I don't know where to get it.

My girlfriend and I already plan on going gluten free in January (the delay is to avoid food complications during the most festive time of year for us), though I don't know how successful we can be for a couple of reasons: 1 - we share pots and pans with our roommates, and they are not very... erm... sanitary as a practice; 2 - my girlfriend loves to cook, and if we need to go gluten free she has a whole shelf of cookbooks that she can't use anymore; 3 - I don't know how well I can stick to something so drastic and restrictive when there's little reason to expect it to change anything.

I'm not sure exactly what I'm looking for here, but I'd appreciate any feedback or advice or even just solidarity that you could offer.
  • 0

Celiac.com Sponsor:

#2 Kansas

Kansas

    Community Member

  • Advanced Members
  • PipPipPip
  • 45 posts

Posted 29 November 2011 - 08:09 AM

Everything you "give up" will certainly be worth it. The girlfriend can still use her cookbooks and continue to cook, she will just become more creative. I just had a lovely Thansgiving with all the tradional foods and served 16 people, everyone loving what was served. The pay off of being gluten free and regaining your health is so worth it! You probably have more symptoms than you know that will dissappear after going gluten free. It won't hurt you to give the diet a try, no processed foods for a couple months, I would also cut out dairy. For Christmas I would give myself and girlfriend seperate cooking utensils, keeping them locked up from the gluten ones.
  • 1

#3 ravenwoodglass

ravenwoodglass

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 13,698 posts

Posted 29 November 2011 - 08:40 AM

Welcome to the board. You do sound like your in the right place. Have you had blood testings again since you were 18? If not it might be a good idea to get another full panel run since just cause you were negative then doesn't mean you will be now.
Many get a lot of relief of depression and anxiety on the diet so hopefully it will help you also.
You will need to use care in your kitchen. Get a new strainer and toaster at the least and don't share any wooden cutting boards etc. You will need new dedicated condiments, mayo, nut butters, butter etc. so do either label them for your use only or invest in a small fridge for your bedroom to keep things seperate.
Your lucky to have a girlfriend that loves to cook. I am sure there are lots of naturally gluten free recipes in her cookbooks and there are some that she will be easily able to convert to gluten free.
Spend lots of time reading here and ask any questions you need to ask.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#4 Black Jax

Black Jax

    New Community Member

  • Members
  • Pip
  • 2 posts

Posted 05 December 2011 - 04:29 PM

I haven't been tested for celiac since my original test at 18 years old, though I did come back as IgA deficient, which sounds like it is often connected based on the anecdotal accounts on this board. I've been hesitant to pester my PCP overmuch as I fear I'm already beginning to sound like a hypochondriac to him. I've also had a low white blood cell count for as long as I can remember. The 'joke' in my family is that whenever something was going around I would get it and get hit hardest by it. I certainly remember being quite sick with some sort of virus on more than one holiday event.

My girlfriend is doing her best to be supportive, but she loves to bake and it's going to be really hard to adjust to gluten-free alternatives... especially with the price point. I have no doubt that I can keep the kitchenware gluten-free, as I'm quite fastidious when it comes to washing dishes (to the point that everything looks perfectly clean BEFORE I wash it with soap and water).

It's just hard to keep believing in myself through all of this. I've never been able to find measurable relief such that I've gone through cycles of doubting the existence of any problems beyond my obvious digestive issues. I'm so sick of feeling like I'm always a fraction of my potential but finding no vindication through medical research. This diet may very well be my last best hope at any semblance of 'recovery'.
  • 0

#5 BethSLP

BethSLP

    New Community Member

  • Members
  • Pip
  • 8 posts

Posted 06 December 2011 - 08:27 PM

I am recently diagnosed gluten intolerant (possibly celiac, still confused on how much to pursue this). Just wanted to lend a word of encouragement to you and your girlfriend. Gluten free baking is quite easy. I recommend checking out as many gluten free cookbooks as you can find in your library system so you can check them out, try recipes, etc. The ones you love the most you can buy on amazon for your collection. My personal favorites are Cybel Pascal's The Allergen Free Baker's Handbook and Elana Amsterdam's The Gluten Free Almond Flour Cookbook. Almond Flour is extremely price-y (and unjustifiably so), but you can buy a big bag of raw almonds at Costco and grind them easily in a mini prep food processor/cuisinart/etc. to make your own almond flour for a fraction of the price. it takes hardly any time and your baked goods are that much fresher and healthier than stuff that was ground long ago.

For me the dietary change has been life changing. I lost 3 lbs. in 24 hours and could not stop peeing all the water retention off. 8 lbs. down the first week. You can google also Paleo baking for good gluten free recipes. I find that while the "paleo diet" is very restrictive, it is when I feel at my best. too much corn, rice or potatoes, and some of my old symptoms seem to return. I am hoping as my gut heals, this will lessen as I did not test intolerant to corn, potato, or rice. I am also dairy intolerant, so I enjoy these two cookbooks because the finished products are amazing (you'll be shocked at how awesome things can taste even without the usual ingredients), and can be enjoyed by anyone with food allergies (I have a vegan friend, a friend who can't have beans, etc.) Cybel Pascal's recipes are basically OK for any allergy.

As for price, pre-made gluten free baked goods are expensive, this is true. But making your own can be very affordable. Also, you'll likely find you don't need to "replace" everything with gluten free versions. Most of my meals are grilled meats, sausages, etc., veggies, rice, etc. things that are naturally gluten free. and regardless of cost, you'll save money on medication, medical bills, etc. if you are no longer damaging your body :( sad but true. my grocery bill is somewhat higher as I buy so much produce and organic meat, but my eating out bill is nil so it evens out. I've also changed my view when thinking about cooking. Its not a burden if you think about it like you are going to a spa. I try to remind myself that I'm doing something nice for myself and my family. Its a wonderful thing to not just eat "convenience" foods without thought or time invested. I realize how many things I ate that I didn't even particularly enjoy because it was premade and I could throw it in the oven. You'll find quick meals you can make but in general, will be eating less processed junk which will make anyone feel better ;)

Also, your girlfriend might like the GLUTEN FREE GIRL blog. She is gluten free and married to a chef and they "live in food." Gluten free is not a food death sentence. Eating out is a bitch, but other than that, its awesome! I really wish I hadn't waited this long for answers. So much time wasted. So much life not fully lived :(

Big hugs to you and best wishes!
Beth
  • 0


0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: