Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

cly

Diagnosed... But Still Sick. Please Help

Recommended Posts

I was diagnosed about six months ago with celiac disease and have been nothing but diligent about avoiding any grains like the plague. After six years of chronic diarrhea, I felt as though I finally found the answer. It seems though every day has become a greater struggle than the last. Today, I ate a handle full of almonds in my car and almost had to run to the gas station. More so, I am sliding into deep depression. It is hard to get out of bed in the morning and when I am running around doing errands I tend to crawl in the back of my car to sleep. Cognitively, I feel like I can't remember anything, which is scaring me. On outside appearances, I am starting an amazing job, I have a beautiful loving boyfriend, friends and family, but on the inside I feel like I am fading away. Has anyone experienced continuing chronic symptoms after being diagnosed? As well as just depletion and feeling like this cycle is never going to end? If anyone has suggestions I really need to pull myself out of this spiral.

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


Welcome to the board, cly.

My first question would be, have you had blood work to test your levels of essential nutrients like Vitamins B12, D, K, A, and electrolytes/minerals like potassium, iron, zinc, magnesium; also thyroid testing. You could be deficient/out of whack in all these things because of the malabsorption syndrome that gluten causes. Since I was self-diagnosed, I had to convince my PCP to test me for these things when I began the slide into depression and lethargy. People told me how great I looked and I felt like crap!! If you haven't done this I would highly recommend it.

After 6 months your gut should have settled into a 'normal' pattern, so if you are reacting to almonds I would eliminate them for now. Sometimes we have developed additional intolerances that may or may not disappear after we completely heal.


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

Share this post


Link to post
Share on other sites

You are definitely not alone here, unfortunately a lot of people have a complicated road back to good health. I know how you feel because I've been there! I'm now 2 years gluten free, and in the middle of an elimination diet that's finally had me feeling totally well at times.

I definietly agree that you should head to the doctor asap and get those blood tests. I've had problems with iron and b12, and they have both made me feel horribly ill when they are low. It's a good idea to get prinouts of the test results so that you can check out your actual values and reference ranges as well.

If everything is fine there, it might be a good time to look in to other food intolerances. Keeping a food diary is a great idea as it can really help to pinpoint problem foods. There are various posts you can look up here about elimination diets, or other food intolerances. It can be tricky to work out what is a likely culprit, but it's worth looking in to. If you can get access to a dietician they can be very helpful.

Another general idea is whether there's any way you could be getting some residual gluten in your system? If you had positive bloodwork at diagnosis you could ask the dr to run the tests again and check that your antibodies are falling. It sounds like you're being pretty careful, but there are just so many ways you might be getting cross contamination.

Hope you find something to point you on your way, I know how awful it is to feel sick and helpless. Rest assured that you can get a lot of help and advice here :)

Share this post


Link to post
Share on other sites

Another general idea is whether there's any way you could be getting some residual gluten in your system? If you had positive bloodwork at diagnosis you could ask the dr to run the tests again and check that your antibodies are falling. It sounds like you're being pretty careful, but there are just so many ways you might be getting cross contamination.

This would be my first step. See if those antibodies are going down.

Are you eating mostly whole unprocessed foods? When eating processed foods are you calling or checking to make sure the foods are safe? We can't always go by just reading the label as not all companies disclose heavy CC risk. Also are you on any scripts or take any supplements or OTC drugs? Generic scripts need to be checked at each refill by calling the company. Name brand drugs just need to be checked with first fill as they can't change the fillers while they are still under patent. Make sure your supplements don't have barley or wheat grass or oats and do check your toiletries and shampoos etc.

Have you changed your toaster and being carefull about CC issues in your home if it is not gluten free?


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)

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 in time with proper diagnosis of Celiac November 2002

 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)

Share this post


Link to post
Share on other sites

i agree with everything above-

also- have you had a colonoscopy too? just to rule out anything in addition to the celiac... i had one done- and it was a relief to know that i didnt have anything else like diverticulitis. PLUS- if you have any polyps- benign or otherwise- they remove them right there on the scene.

plus- you DID suffer thru 6 years of "D" .. it may just take a little while longer to heal those villi

hope you feel better!!


1986- Elevated Speckled ANA/no Lupus.negative Sjorgens

2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.

no biopsy (insurance denied)

6/2010- Enterolab Gene Test:

HLA-DQB1 Allele 1 0302

HLA-DQB1 Allele 2 0302

HLADQ 3,3 (subtype 8,8)

7/2010- 100% Gluten Free

8/2010- DH

10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

Share this post


Link to post
Share on other sites

Thank you all for your posts. I realize it is going to be a long path. It is really nice to have a community here, all be it, cyber that understands and has a well of past experiences to draw from. Makes me grateful for that. I get a bunch of blood tests back soon and I have a scheduled endoscopy in a month. Hopefully, I can learn and contribute more to this forum as my own healing progresses.

Share this post


Link to post
Share on other sites

Good luck. Also, have you had your thyroid checked? An awful lot of us have thyroid disease, which is one of the many things that can cause memory issues, depression, and sleepiness.

Share this post


Link to post
Share on other sites

Good luck. Also, have you had your thyroid checked? An awful lot of us have thyroid disease, which is one of the many things that can cause memory issues, depression, and sleepiness.

The way you describe your depression makes me so sad. There have certainly been days when I felt hopeless...mostly because I probably had some hidden gluten.

Just keep reaching out to others...world wide web is better than nothing; tho it sounds like you have some great support.


I love what I do, and feel that it matters. How could anything be more fun?

Share this post


Link to post
Share on other sites

You may need to watch out for cc in your diet. Some of us are more sensitive to that than others. For instance, I only eat almonds that I shell myself. Gluten free grains can be cc'ed. Look for the Tricia Thompson study. I hope you feel better soon. For me, depression is a big part of glutening.

Share this post


Link to post
Share on other sites

All good advice. Double checking your vitamin pills or eliminating them for a few days may help too. Some of the multi-vitamin pills have so many ingredients it's hard to know if one of them is bothering you except to not take them for a few days. Not that all vitamins are bad, but you have to be careful with them. I think it is best to get pills with only a few ingredients, like C and D, or calcium and magnesium and D, etc.

Also, if you have eliminated all gluten from your diet, thinking about other food intolerances is a good next step. Check the top 8 food allergens lists for ideas of where to start.


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

Share this post


Link to post
Share on other sites

Clean your steering wheel, dear, especially if a glutenoid has been driving your car and went thru a fast- food driveway gluten dispensing facility. :rolleyes:

"a glutenoid" .... HILARIOUS!!! :lol: i am totally stealing this


1986- Elevated Speckled ANA/no Lupus.negative Sjorgens

2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.

no biopsy (insurance denied)

6/2010- Enterolab Gene Test:

HLA-DQB1 Allele 1 0302

HLA-DQB1 Allele 2 0302

HLADQ 3,3 (subtype 8,8)

7/2010- 100% Gluten Free

8/2010- DH

10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

Share this post


Link to post
Share on other sites