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Going about testing

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Hello everyone. I will try to keep it short. 

Edit: Just throw this into the autobiography section? I'm very sorry for the length :(

 

Background:

I've had symptoms most of my life (now 20) but was pushed to great concern last summer when eating gluten and oats was directly causing me to become very suicidal, angry and depressed immediately after consumption. The anger and strength of the suicidal urges and thoughts was alarming.

I suspect my growth and height have been effected as my younger siblings are both 8+ inches taller than me and my parents are quite tall as well, who have joked about my "stunt". I've always fought depression and have come to the conclusion that it's chronic or life-long with it's severity, treatment resistance and genetic factors (severe with most family members). I have a blood disorder from those Mediterranean genes, beta thalassemia minor thus anemia of chronic disease.

I'm certainly intolerant to gluten, wheat, dairy, eggs etc (vegan) and now other things (oats, corn ingredients, xantham gum etc) assumed from continuing to consume gluten for so long. Extremely distended, pregnant-like stomach after eating, generally feeling like I've been hit by a bus, dry and flaking eczema or psoriasis-like skin on face, itchiness all over including scalp, confusion, depression, anger, debilitating headaches, did I mention the severe bloating.... all of this I have connected to gluten.

One of my younger siblings was diagnosed with autism around the age of 3 and for some reason, potentially tested as celiac or gluten intolerant, this led to being suggested a gluten-free diet. He was only following this diet for a few years at my parent's hands and the improvement was absolutely remarkable. A new person. Fast forward to now and it seems like 90% of what my family members eat is gluten, including specified sibling. Most have very bad eczema, mood problems, bloating. The autistic sibling's eczema and skin issues are very prominent along with general mood crises. 

 

Now:

I have been continuing to eat gluten anywhere between 1-6 times a week since November 2017 or moving back here and not living alone. I'm a different, greater, healthier person without gluten. I would like to get tested because I'm hurting myself and cannot function. I feel terrible and I look even worse. I struggle with an eating disorder and binging and combined with living in a gluten filled household, no matter the awful symptoms, it's very hard to stop. So much physical pain. I have never felt more depressed and suicidal. Fortunately I will be moving away/out in 2 months and working to purchase groceries again..

 

TLDR: Do I simply call the office of my primary care physician and make an appointment? What exactly do you say to the receptionist for a "full blood panel" testing?

I just had "routine blood work", would that show anything related to the gluten? How much gluten am I supposed to be eating before the blood test or endoscopy?

 

I'm also concerned about the cost or co-payments. I have health insurance via parents but anything not covered is up to me. I would be incredibly disappointed if the initial testing turned out negative. I'm so exhausted, I can't stand or live like this anymore.

I just need the push or validation of a doctor's opinion or diagnosis to make the changes and heal....

Edited by asdf

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Read this about screening http://www.cureceliacdisease.org/screening/

 

I am a bit rushed right now with some things, but I can say all your symptoms point at celiac. The testing involves eating gluten for 12 weeks at least 1/2 a slice a bread a day prior to the blood test. Then you will need to schedule a endoscope and be sure to be eating it another 2 weeks prior to that. This will get your offical testing done.

The disease requires gluten free diet for life, it is very manageable in a dedicated gluten-free house....sound like what your NEEDS to be no offense. The whole psychological, and mood side of it is a combo issue and can be compacted by nutrient deficiency of B-vitamins and magnesium from a damaged gut, this will require supplementation at first but later improves and can sometimes be managed by a whole foods diet later on. Other aspects if you have them gluten can cause nerve and brain damage in some celiacs or just mess with your nervous system and brain while on them. I am sure others will elaborate on these further for now I need to go. I will leave you some other helpful links for preparing for the diet and some helpful things to look forward to once you start healing.

Binging..yeah I do that often, it comes with nutrient deficiencies caused by a damaged gut. Look at what your craving, look it up find out what your really craving and eat a gluten-free alternative, Sublingual Multivitmains can help I like Liquid Health formulas as they can be just mixed in a liquid. Finding something that takes a long time to chew also helps like WHOLE pumpkin seeds or cocoa nibs from places like Mygerbs.com and crio bru.

Living in a shared house, once you get your diagnosis done I would get the following, keep your own gluten-free food in a separate area, get Microwave cookware from nordicware for cheap cook ware you can have for dedicated gluten-free meals, the steamers, rice makers, grill plates are great with the splatter cover. I would suggest the omlette maker but your a no egg guy (I live on egg whites, can not eat other meats or yolks much myself...or grains, fruit, starchy veggies)
Freezer paper butercher paper can be layed out for a clean prep and eating area so no Gluten residue or crumbs to CC your food. get your own utensils, or plastic disposable ones. and make sure you have your own condiment jars of gluten-free certified condiments for you only so no crumb laden gluten spoons/knifes get put in them.
https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

https://www.celiac.com/gluten-free/topic/120402-gluten-free-food-alternative-list-2018-q1/

 

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On 2/1/2018 at 8:33 PM, Ennis_TX said:

Read this about screening http://www.cureceliacdisease.org/screening/

 

I am a bit rushed right now with some things, but I can say all your symptoms point at celiac. The testing involves eating gluten for 12 weeks at least 1/2 a slice a bread a day prior to the blood test. Then you will need to schedule a endoscope and be sure to be eating it another 2 weeks prior to that. This will get your offical testing done.

The disease requires gluten free diet for life, it is very manageable in a dedicated gluten-free house....sound like what your NEEDS to be no offense. The whole psychological, and mood side of it is a combo issue and can be compacted by nutrient deficiency of B-vitamins and magnesium from a damaged gut, this will require supplementation at first but later improves and can sometimes be managed by a whole foods diet later on. Other aspects if you have them gluten can cause nerve and brain damage in some celiacs or just mess with your nervous system and brain while on them. I am sure others will elaborate on these further for now I need to go. I will leave you some other helpful links for preparing for the diet and some helpful things to look forward to once you start healing.

Binging..yeah I do that often, it comes with nutrient deficiencies caused by a damaged gut. Look at what your craving, look it up find out what your really craving and eat a gluten-free alternative, Sublingual Multivitmains can help I like Liquid Health formulas as they can be just mixed in a liquid. Finding something that takes a long time to chew also helps like WHOLE pumpkin seeds or cocoa nibs from places like Mygerbs.com and crio bru.

Living in a shared house, once you get your diagnosis done I would get the following, keep your own gluten-free food in a separate area, get Microwave cookware from nordicware for cheap cook ware you can have for dedicated gluten-free meals, the steamers, rice makers, grill plates are great with the splatter cover. I would suggest the omlette maker but your a no egg guy (I live on egg whites, can not eat other meats or yolks much myself...or grains, fruit, starchy veggies)
Freezer paper butercher paper can be layed out for a clean prep and eating area so no Gluten residue or crumbs to CC your food. get your own utensils, or plastic disposable ones. and make sure you have your own condiment jars of gluten-free certified condiments for you only so no crumb laden gluten spoons/knifes get put in them.
https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

https://www.celiac.com/gluten-free/topic/120402-gluten-free-food-alternative-list-2018-q1/

 

Thank you so much for the opinion and suggestions! Funny, I ate a lot of cacao nibs last summer. Must say that I've lurked this forum plenty and find your replies to be very knowledgeable, helpful and kind.

 

My neurological effects are prominent. Depression, anxiety, insomnia, ADD, peripheral neuropathy.  I'm wondering if antidepressants and the like in the past were ineffective due to gluten. Psychiatry and medication also ruined my life, mind and body but that's another story.

The slow but sure increase of food intolerances is alarming and a clue. I used to live off oats! To happily be a lifelong vegetarian turned vegan alongside OCD/an eating disorder then discovering even more foods need crossed off the list... it's difficult. Surely many people here relate with restricted diets and options.

 

Not even sure right now that I could handle another day of gluten. Very anxious and indecisive over making any new appointment. I will be returning to my doctor in one month for a medication refill and will make a strong point about my concerns. Until then and afterwards, most likely abstaining from wheat/soy/everything because I am truly miserable. Wonder if a blood panel then/1 month from now would be worth anything. Or how curious/telling the routine blood work just taken was.

My list of "pros" to receiving diagnosis right now is not convincing or long enough..... or in comparison to how terrible I'm feeling. Concerned about the cost, moving away to a new job in only two months so need to feel better by then. I crave to feel joy, anything besides this painful gluten cloudiness!

Rambling but just trying to figure it out, talk myself firmly against this poison... I really can't continue.

Edited by asdf

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1 hour ago, asdf said:

The slow but sure increase of food intolerances is alarming and a clue. I used to live off oats! To happily be a lifelong vegetarian turned vegan alongside OCD/an eating disorder then discovering even more foods need crossed off the list... it's difficult. Surely many people here relate with restricted diets and options.

Yeah, I have my own list.....many went away after years of healing....some within a few months of going gluten-free...thank god pea protein was fine after a few months. Others stuck around for years, others roll in at random for a few weeks, and a few come back if I get CCed. Try a rotating diet removing a staple food for a week every few months to prevent new issues (according to my dietican this helps) Worse thing is when you get a allergy to a food.....I got a corn allergy....I grew up in a mexican family so that hit home worse then gluten with celiac.

 

 

1 hour ago, asdf said:

My neurological effects are prominent. Depression, anxiety, insomnia, ADD, peripheral neuropathy.  I'm wondering if antidepressants and the like in the past were ineffective due to gluten. Psychiatry and medication also ruined my life, mind and body but that's another story.

Oh look a twin of issues...yep I found the Stress & Energy and Neurological Support from Liquid health 1 tbsp each 3 times a day to work wonders with most the issues...the neuropathy has it's good and bad days but mostly due to nerve damage.....that takes decades to heal so I doubt I can ever have full feelings back or enjoy games like I used to. Bright side I can injure my hands and fix them without pain lol. And the list of drugs docs used to have me on as a kid to fix my "issues"....ones I can recall Adderall, Depokote, Seroquel, Zoloft.....there was at least 4 others.

 

I had to give up red meats, pork, and limit myself on poultry due to enzyme issues....but I found a few great things. 1. Upton Jack fruit are preseason ed, tough texture, but give them a rough chop and cook them to soften them up for a meat sub. 2. Naked JackFruit Company...I get the food service packs of raw ones for $9, and season with meat seasonings, and cook them up or use sausage seasoning like chorizo and run them through a meat grinder to make vegan sausage. Carb issues so I still eat in moderation but this enabled me to enjoy meat flavors without puking. I have some recipes on my profile recipe blog you might like like Vegan Taco Soup etc,
I have a food list with vegan cheeses, vegan chips, vegan ice cream.....the occasional treat works wonders for ones mental state.

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