Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

My Story - Need Help


alevoy18

Recommended Posts

alevoy18 Explorer

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



mushroom Proficient

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.

SoyBoy Rookie

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.

alevoy18 Explorer

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?

tarnalberry Community Regular

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.

mushroom Proficient

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.

Marilyn R Community Regular

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



dilettantesteph Collaborator

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.

ravenwoodglass Mentor

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.

alevoy18 Explorer

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.

mushroom Proficient

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

GFinDC Veteran

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.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,868
    • Most Online (within 30 mins)
      7,748

    Joyetta
    Newest Member
    Joyetta
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Shining My Light
      Thank you @trents! This is all sound advice. In 2022 I did have a biopsy done with the EGD: SPECIMEN: (A) DUODENUM, BIOPSY (B) GASTRIC BIOPSY(C) GASTRIC POLYP, BIOPSY(D) ESOPHAGUS BIOPSY (E) ESOPHAGUS BIOPSY This would have been when the candida was found.  If I understand right it’s the duodenum they take a biopsy of. Nothing was mentioned about Villous atrophy however they were not looking for that particularly.    Something that stumps me is the correlation between symptoms and damage. One seems to equal the other. I have yet to see damage with “silent celiac”. Not saying it doesn’t exist.  Also super curious on other symptoms that would improve based on a gluten free diet. Obviously silent celiac wouldn’t have an improvement in GI symptoms but that is all I have read any data for. No one saying things like my anxiety went away or my headaches and joint pain are gone.    I see why it would be a “gluten challenge” since eating 4-6 slices of bread daily is a challenge to do. 😳 I would replace that with cake 🍰😉 
    • xxnonamexx
      I know I haven't been tested for Celiac yet. But If I took a blood test would they be able to say what I am deficient in as far as vitamins and minerals so I can see what supplements to take or is it not that easy to figure out what is needed to balance out vitamins/minerals. 
    • trents
      All that is exactly why you should have an endoscopy with a biopsy of the small bowel lining done. It's a very simple procedure and in the US they put you under for it so there is no discomfort. You don't even have to do a cleanout like you do for a colonoscopy.  It might also be wise to wait a few months and get the tTG-IGA checked again if nothing else. If it elevated now due to some temporary infectious process, it should not remain elevated. But a biopsy would distinguish between IBD and celiac disease. And remember, the diagnosing of diseases is often not a black and white, cut and dry process. You often have to weigh all the evidence and just go with what is most likely the cause. When tTG-IGA is elevated, the most likely cause is celiac disease. And the gold standard test for diagnosing celiac disease is still the endoscopy with biopsy. But if you decide to go for further testing for celiac disease of any kind, you must not first embark on the gluten free diet.
    • knitty kitty
      I understand your exasperation.  My doctors were totally clueless.  Me?  I couldn't believe it was so simple.  I had studied nutrition before earning a degree in Microbiology because I was curious about what the vitamins were doing inside the body.  It's about giving the body the nutrients it needs to heal.  Read my blog for more of my journey...  Do take the time now to make some changes.  It's a matter of putting on your own oxygen mask first before you do anything else.  I regret I didn't do more to take care of myself first.  It's amazing how quickly ones life can unravel if in poor health. Simple things you can do immediately that will help are: Stop consuming oats, dairy, and corn. Keep a food-mood-poo'd journal so pinpointing problematic foods is easier. No alcohol. Avoid nightshades.  Do cut back on or eliminate processed gluten free facsimile foods.  These are not nutritious.  They are not enriched with vitamins and minerals like their gluten containing counterparts.  They contain saturated fats and excess fiber that can be irritating to the digestive tract.   They are high in simple carbohydrates that promote Small Intestinal Bacterial Overgrowth (SIBO). Do focus on meat, veggies, fruit and healthy Omega 3 fats (olive oil, avocado oil).   Do make stews and roasts overnight in a crockpot.  Make small batches.  Leftovers increase in histamine the longer they are left.   Do talk to your doctor about supplementing with a B Complex and Benfotiamine (a form of thiamine shown to promote intestinal healing).  There are eight essential B vitamins.  They work in concert together like an orchestra, so they need to be supplemented together.  Taking extra thiamine and Benfotiamine have been shown to be beneficial.  Weight loss can be a symptom of insufficient thiamine. I believe you mentioned you were low in some vitamins. Can you tell me  which ones?  
    • Shining My Light
      @trents - sorry, I know that didn’t make sense. I need to get better at rereading the things I write.    The people I know of that have a gluten sensitivity or intolerance have tested negative for celiac. They can’t have gluten of any kind without having a reaction. That to me isn’t helpful. If I reacted to gluten I wouldn’t eat it regardless of it being celiac or not. I’ve come to learn the real issue with celiac is the damage, not the intolerance.    Gliadin Deamidated is another test I’ve seen that I wanted to get done. Also, the genetic testing. HLA-DQ2 and HLA-DQ8. Although my liver levels are not elevated now, I went through a time when they were. I would say maybe 7 years ago. I also had major GI symptoms at that time. They had ordered a EGD then but I chickened out. This makes me even more confused. I would think that if celiac were the cause my liver numbers wouldn’t have improved. Which again makes me think more of IBD being the cause of my TTG levels being elevated.  One thing that would make me motivated above all else is the neurological aspect. I’m still trying to dive deeper into that which has me the most interested. I think GI issues are an obvious symptom, it’s the connection in the rest of the body, particularly brain function that is most intriguing.         
×
×
  • Create New...