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My Story - Need Help


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11 replies to this topic

#1 alevoy18

 
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Posted 14 October 2010 - 11:37 AM

Hi,

Firstly, I am a 24 year old male. It has been hell in the recovery process so far. I was diagnosed in November, 2009. At that time I already had a pacemaker for bradycardia/severe vasavagal syncope, on meds due to low blood pressure, mildly anemic and had many concussions due to blackouts (bp related) and was down to 138lbs (normal weight for me was 165). I was diagnosed because I was sent to a hematologist who felt my anemia was GI related, and the rest was history. Since then, I am now on Betablockers because I've been getting inappropriate sinus tachycardia. My neurologist has told me that it is due to autonomic nerve damage due to undiagnosed Celiac disease. Basically I don't have structural damages to my heart or anything, but without the pacemaker meds, my heart would beat slowly sometimes down to 30 during day or as high as 250 as soon I would do anything more intense, all due to my autonomic system being damaged. Also my blood pressure sits low all the time and when I stand up it can drop 30/40 points on a bad day even with medication.

Since my gluten free diet, I was getting better for a few months, but then started going downhill again. I went up from 138 to 162lbs initialy, but now I am back down to 148lbs over the last little while. My antibodies went down, but not very much. My vitamin levels are all within normal range, the only one I know could use some work is my B12 at 260. I am so worn down everyday and I am still having episodes of blacking out. I hit my head 12-15 times and had multiple concussions before being diagnosed, so I already experience headaches, but with each fall I am getting worse (no damage to brain, just multiple mild concussions).

I have worked for RBC since 2007 and have been off work since June 2010 because I collapsed and my hit my hard again. I just haven't been feeling well and my doctor wants me to take it easy, so I have been off for a little over 4 months now. I am just afraid to lose my job, as I was off for three months when I had my pacemaker surgery as well and now four months as I am trying to get better. I am listening to my doctors though and am trying to get better whether work like it or not. My doctor said stress will increase the likelyhood of autonomic issues and she want to limit stress until I improve.

It just feels like I am not going to get better. When I was diagnosed, I was at Marsh 3B and had gastritis. I just don't know what to do really. My new GI doctor says the autonomic issues with my heart and BP may never get better. I just want to stop feeling fatigued and having these headaches, dizzy spells. My GI doc is now sending me for a lot of tests including blood work, the DEXA, small bowel x-ray and a colonoscopy. Also I just had an FNA done because I had lymph nodes swelling in my neck and armpits. The original largest node was 2.4cm x 0.6cm in my right armpit, over 6 weeks it grew to 3cm x 1.5cm. Even though it had a fatty hilum, the cortex was enlarged so my surgeon was a little worried for 3x growth in width over 6 weeks. I will get the FNA results soon.

Sorry for the rant, but just wanted to let you know my story, in case you had any advice as my life feels like it not the same. I just feel worn down everyday. I want to get my job back, but I know I can't handle it feeling like this, so I am just lost.
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#2 mushroom

 
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Posted 14 October 2010 - 12:05 PM

I am so sorry that you are having such a rough time of it all. I too take the beta blockers because of of (in my case) initially a racing heart and now atrial fibrillation, which followed on from the vasovagal syncope reaction I used to get.. However I have managed to avoid the concussions, although I almost took out an eye when I landed on a door stop :unsure: For myself, I found that it was not just the gluten that was the problem. I have a problem with lots of other foods too, which initiate this response. I wonder if you could be reacting to others too. Do you still have any GI or other reactions besides the weight loss and syncope? My fainting episodes were always triggered by bloating and pressure on the vagus nerve. And I still get the atrial fib. if i consume any of my trigger foods - soy, corn, legumes, nightshades. I really do wonder from reading your post if you might have other trigger foods too.
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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

#3 SoyBoy

 
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Posted 14 October 2010 - 12:44 PM

I had dizziness, fatigue, neuropathy, and my heart rate was 48 (not nearly as low as yours). My B12 was at 258 at the time. I took 1000 mcg of sublingual B12 per day, and got my level up to 500. All of my symptoms improved.

Even though your B12 level is low / normal, it may be worth talking to your doctor about supplementing or shots.

Best wishes.
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#4 alevoy18

 
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Posted 14 October 2010 - 01:53 PM

Hi,

Thanks for the responses.

Mushroom: I'm sorry to hear you went some difficult times as well from the sounds, but I'm glad you are doing better. My new GI doctor is checking for lactose tolerance and then going from there. I have not been tested for any other allergies though. On top of the weight loss and syncope, I am having the same fatigue, memory issues I used to. As far as GI issues, I still have bloating, craps, gas and the same old symptoms as pre-diagnosis, except I seem to be more on the constipated side now instead of diarrhea (maybe because of less fiber in my gluten-free diet). I am very strict on my diet, don't eat out, separate everything in the kitchen, eat mostly rice/potatoes/veg/meat and some snacks that say gluten-free on them. Not sure what is going on, maybe it is another allergy. Can another allergy cause the Celiac type immune damage to the intestine though, or just mimic it?

SoyBoy: I also agree here, I want my B12 higher. The problem is my doctors don't feel 270ish is worrisome. I read everywhere that B12 needs to be more in midrange and that nerve damage can be seen under 400. I have taken B12 myself, but the numbers stay the same. I'm running out of options on this issue, but I will ask my new GI in a couple weeks about what he thinks.

Thank you both!

FYI, my FNA came back today as inconclusive.
---

SPECIMEN ADEQUACY
------------------
- Unsatisfactory for evaluation

DIAGNOSIS
----------
- Unsatisfactory for evaluation
- Few scattered inflammatory cells

Now I will likely just have to sit in the wait and see approach :-(. Oh well. I'm not sure if anybody has had an FNA before but does the few inflammatory cells mean anything, does that mean more likely benign?
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#5 tarnalberry

 
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Posted 14 October 2010 - 02:07 PM

If you have a shared kitchen, and are eating prepackaged gluten free items, you mayt still be getting contamination. Some people are VERY sensitive, and have to avoid all processed foods, have a dedicated kitchen, and some avoid even gluten free grains, which a recent study has show may tend towards contamination just from the process of growing/transporting them.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#6 mushroom

 
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Posted 14 October 2010 - 03:02 PM

I have not been tested for any other allergies either. For me it has been a process of trial and error. My testing has been, if I eat it I have symptoms, if I don't I have none.

Before I discovered the gluten response I was getting the some GI response from corn. And I discovered I was lactose intolerant (diarrhea, stomach cramps) long before I discovered the gluten. So in my case, yes, other things can produce the same symptoms as gluten. The soy and potatoes, however, used to produce hives and/or an itchy rash; now they all produce atrial fibrillation.

If there is gluten in your house, that could be a source of cross-contamination. For those who are extremely sensitive they really do need a dedicated gluten-free living situation. Also avoid any processed foods that are made on shared lines or in a shared facililty.
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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

#7 Marilyn R

 
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Posted 14 October 2010 - 04:05 PM

I'm 50 y.o. with a family hx of pernicious anemia (from maternal grandparents to mother to me) and celiac disease. I became symptomatic and suffered 25 years later in life than you, but have had similar reactions, including wicked tachycardia.

Eliminating soy, gluten and dairy has improved my world 150 percent. I've wondered about corn, and I'll find out tomorrow, since I made a gluten-free DF SF cornbread tonight. I didn't mean to have a challenge, just craved cornbread and made it with an internet recipe I found earlier with stuff I had on hand and consumed it before I read this post.

I hope you find your answer, and wish you all of the best. Soy's tough to give up and has invaded our food supply, but OMG if soy is the culprit, you will do so incredibly better once your cells are waiting for real "bad" things to attack instead of a protein that is harmless, and even beneficial to other people (just like glutin). I'm down to 138 lbs. on a 6' frame, but I'm female and people think I'm trying to accomplish the "thin" look. So I also feel empathy for what people say to you about your weightloss.

Try eliminating soy for awhile, and dairy if necessary. That's my heart given advice along with best wishes for a better life.
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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#8 dilettantesteph

 
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Posted 15 October 2010 - 04:20 AM

If you have a shared kitchen, and are eating prepackaged gluten free items, you mayt still be getting contamination. Some people are VERY sensitive, and have to avoid all processed foods, have a dedicated kitchen, and some avoid even gluten free grains, which a recent study has show may tend towards contamination just from the process of growing/transporting them.

I am one of those people. I was still very sick when I was eating prepackaged gluten free items. Try a whole foods scratch diet and see if that helps. Even with a whole foods diet, I had to take further steps to avoid contamination. I eat very little processed food at all. At the moment I don't eat any sweeteners. Also I wash everything with soap: coffee beans, whole grains, and meat as well as produce. I peel when possible. I hope that helps to get your numbers down.
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#9 ravenwoodglass

 
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Posted 15 October 2010 - 05:23 AM

Your B12 is quite low. Do get some sublingual B12 supplements if your doctor does not want to do injections. Make sure they are sublingual as your body won't absorb and utilize it from tablets or food until you have healed.
Have you checked all supplements and script meds for gluten ingredients? If not call the makers and check. Also check your toiletries and do take the precautions you need to in your home to make sure that you are not getting CC'd.
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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)

#10 alevoy18

 
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Posted 15 October 2010 - 07:52 AM

Thanks for the advice.

I am in the process of limiting my diet down now. I am trying to go with a meat/veg/rice type diet until I see some improvement. I have separated my kitchen the best I can, separate pots/dishes/sponges/toasters/etc. I'm hoping this improves without more changes to my kitchen and I don't want my fiance to have to go gluten free (too expensive and she enjoy's gluten foods). How does everyone else handle this?

As far as the B12, I agree it is too low. I have been on B12 sublingual's for the last 6 months and the number went from 270 to 279, so no change really. I am going to press my doctors for shots again, but I'll see how it goes. I have checked with the pharmacist and he told me my meds were ok.

Thanks again.
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#11 mushroom

 
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Posted 15 October 2010 - 10:49 AM

Kissing a gluten eater can be a major source of cc, unless teeth are brushed first :o
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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

#12 GFinDC

 
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Posted 15 October 2010 - 02:06 PM

Hi Alevoy

I had fainting spells also until I got off soy. It can do a real number on a person. I know some people wear a helmet for safety due to possible falls. It could be a a big help if you were to fall again. Can you quickly kneel down when you feel faint? I don't know if there is enough warning time (if any) to do that. I used to fall over while sitting sometimes but I could catch myself most of the time before I went completely down. Once I got off soy I slowly got better and for a while would feel kind of a weakness instead of a complete faint. But that eventually went away also. I don't miss it at all.

I am off gluten, soy, dairy, nightshades, (tomatoes, potatoes, peppers, eggplant), food preservatives and food colorings and a few other things like carrots, celery, garbanzo beans, coconut, coffee and tea.

I had been gluten free for quite a while when I Was having those fainting spells, and the thing causing them was soy. I had my head examined by one of those head doctors (nuerologist) with the wires and blinking lights and such. No problem found though. And no help either. The soy was the culprit all along. Going off soy I started feeling better in a week and a half, but didn't really feel a lot better until 45 days later. It was a slow steady improvement instead of an all at once thing.

There are some tricks to gluten free that might help too. Use separate condiments from other people, and mark them gluten-free. Shared containers can be contaminated by a shared knife. Also you should have your own toaster, as crumbs get stuck in them all the time. A separate colander for draining foods is also good. Make sure all your vitamins are gluten-free and soy free too. Look for natural peanut butters as they are generally soy-free.

You can make a nice meal from chicken and rice and a few veggies. Also you can get hemp milk at some stores instead of soy-milk.

Eat simply and eat foods made from whole ingredients. Don't use spice blends in cooking. Single ingredient spices from McKormick are safer.
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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, and hard work. have a good day! :-) Paul




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