I am 56 years old and I love life but life does not love me. I AM COSTALY severely ill from Everything that I consume. From anaphylaxis shock ie: last night and again today...please advise

[savona]

I am so sick. Intestinal infection,colon inflammation for which am on Flagyl, doxicyclin and ciproflaxine. I'm taking 60 mg's prednisone. I've been in and out of urgent care and er'4 times in the past 8 days.  Anaphylaxis shock last night and again today. Was sent home with an epi pen. Living on benadryl, Tylenol in addition to the above.

Please, can anyone out there lead me to how to approach this via MD. I'm not as  strong as my usual self. Many docs discount celiac. I was diagnosed with it in Canada's medical system while living there.  In the U.S., I've had 12 CT scans in the past 3 years.  How do I set myself up where a doctor will hear me? Please advice. 

[trents]

Welcome to the forum, @savona!

How long ago were you diagnosed with celiac disease?

Since diagnosis with celiac disease, have you been diligent to follow the gluten free diet?

Are you saying your primary care doc doesn't recognize your celiac diagnosis while in Canada as a valid or are you dealing with an obstinate gastro enterologist?

What's keeping you from switching to another doc?

Who is prescribing all the antibiotics, prednisone, etc. you are currently on? Your primary doc, a GI specialist or an ER doc?

Edited August 25, 2024 by trents

[savona]

Er & urgent care doc, meds. MD too far for me to drive,  when ill and need to see him, it's almost impossible to get in so, I've given up.  Looking this week for another,  have been diligent in looking. When i find one who is " taking new patients" here, in Tucson,  they oddly have no availability until March and April 2025. Again, i give up so,  I go to urgent care. 

I didn't realize that my reaction to food is actually allergic response to msg and food additives, which are related to msg. Literally,  as many folks in this place,  I discounted the reality of how a serious auto immune disease creates such a defense that it goes into shock.

I react to all perfumes and detergents. I get so exhausted changing my clothes and avoiding people who are wearing hair spray and fabric softener on their clothing. 

I have no regular Gastroenterologist because every single time that I've been hospitalized, which, since I've lived here,  I've lost count on hospital stays, CT scans and colanoscopies, they send me home with the report that I have no cancer and I've got rectal colitis and small bowl inflammation. This"requires" that I stay on mesasalamine suppositories and orals. This, causes my bowel to react and spews them out and the orals never work for me. While on these meds, I remain gluten free and dairy free. Then, I give up.

My weight goes from size 4-10 in a few weeks of this constant battle. Muscle wise, I have weakening of my muscles in my hips,  my legs and shoulders. It's as though I am a waking rubber band.

I've always been in great condition but, I've aged over the past 2-3 years and feel like I'll never be me again. 

My husband was chronically ill for 2 years where I was his only person. I had septic twice while caring for him on top of being severely ill with my condition.  This kept me on constant prednisone, Antibiotics Tylenol and benadryl.

When you say, "obstinate gastro enterologist", meaning, please?

Celiac, years ago. I believe, in 2014'ish. I've been told over and again that I need a biologic but due to my reactions to simple colon meds/orals/suppositories,  I have declined on taking that route as, I feel strongly it is a cop out to what the bottom line course of action ought to be. 

No one has tested me here for celiacs disease. Should I push that? I believe that I've MG or something of that nature now.  In all likelyhood it could well be the histamine reactions from being celiac that is causing my muscle weakness episodes. 

I do have crohns along the upper potion of my large intestine which,  when inflammation occurs,  I cannot swallow and I choke alot. 

Apologies for the long windedness.

Thanks for your prompt reply to my post. 

Gluten, honestly,  I've fallen off that horse but, as of the anaphylaxis shock twice over the course of 24 hour period,  I'm riding that saddle again. Re: Bottom line!

I am able to be extremity sold out to an organic only, zero restaurant, zero under the ground grown vegetables, zero gluten, diet. I can and, will remain diligent. 

The question is, How do I move forward from here? I would love to be prednisone free, first and foremost.

blessings

 

 

[savona]

Trents, yes,  I absolutely am dealing with  obstinate gastro enterologists. Biologics have been the only solution according to them

[trents]

Are you currently under the care of a gastroenterologist? Your post is confusing to me in that you seem to have said on one place you are only being treated in ER/Urgent care settings but in you most recent post you say you certainly are dealing with obstinate gastroenterologists. 

Are you totally against the use of biologics?

Have you tried the autoimmune protocol diet (AIP)? https://www.healthline.com/nutrition/aip-diet-autoimmune-protocol-diet

And it would be critical to be consistent in your gluten free diet.

Have you been definitely diagnosed by a GI doc as having colitis or microcolitis? It concerns me that you are on all those antibiotics. That has to trash your gut microbiome but if you have certain intestinal infections it may be necessary. But I would be concerned about you developing c.dif if you were on all those antibiotics for significant periods of time.

[savona]

Hi Trents,

I was dealing with the gastroenterologist but there have been a few of them here in Tucson,  in my treatment "plans". While one suggests one things anther says, not necessary... I am against biologics.

I am seeing an infectious disease specialist next week. 

I'm sure he'll not want me antibiotics but I'll tell you,  I feel 40% better today than I've felt in 2 weeks! I had seriously high while blood cell counts.

My blood is sent off to be tested western bolt, Lyme. I had Lyme borellia, bartinella, and babesios and other co infections in 2009- 2010. While I recovered from that after a year of 3500 mg's anti biotics/anti protezoas/anti malarial meds, I recovered but did not totally bounce back as my colon began to inflame and it slowly worsened into a chronic state.  I've been on steroids regularly since 2014...

100% gluten free, msg and chemical free. No perfumes.  No food additives. I'll be eating at home. 

I'm looking at this autoimmune protocol diet now.  I'm not familiar with this. Although, nothing can be worse that the Lyme diet.  

Ulcerative colitis of the left, crohns in my upper intestines. Many sigmoids and colanoscopies. CT scans.  I'm so tired of being so so sick! This all began with a tick bite.

I went to Canada to visit 4 weeks ago and a tick landed on me and implanted itself on the back of my neck.  I removed it but it was a hell of a night.  Here I am, sick as expressed in this chat. 

I appreciate any support that I can gather from you while I journey yet again,  to ridden of pathogenesis and spiraketes. 

I'm taking ivermectin as well.

Your thoughts are welcomed!

Cheers

Signing off for the night.  Sleep well.

 

 

[Wheatwacked]

On 8/25/2024 at 1:39 AM, savona said:

I was diagnosed with it in Canada's medical system

Celiac Disease can mimic over two hundred diseases and symptoms.  How long have you been gluten free?  Seems to me they are over treating you with everything just because they don't accept your Celiac Diagnosis.

 

On 8/25/2024 at 11:27 AM, savona said:

mesasalamine suppositories and orals. This, causes my bowel to react and spews them out

Sounds counterproductive.  What happens if you don't take it?

Why did they put you on Invecta, did they find parasitic worms in your many colonoscopies?

What caused the anaphylaxis?  Could it be the medications?

In my personal opinion I would not go off prednisone (cheap) for Biologics (Biologics can be expensive, with some costing between $10,000 and $40,000 per year).  "These agents block immune pathways adapted to protect the host. This has been borne out by increased rates of infections as well as induction of new autoimmune and hematologic adverse effects." Unintended Immunological Consequences of Biologic Therapy  You have enough problems and the ones you are on are already immune system supressants.

60 mg a day prednisone seems really high.  How long?

Are you getting enough vitamin D, Thiamine and Choline in your diet?

 

[Wheatwacked]

On 8/25/2024 at 1:39 AM, savona said:

Flagyl, doxicyclin and ciproflaxine

Flagyl, doxicyclin and ciproflaxine can cause anaphalaxis.

Prednisone does not. In fact Corticosteroids are thought by some to prevent it and are commonly used in the emergency treatment of anaphylaxis.

[GardeningForHealth]

1. If you are a person with Celiac, then you must stay gluten-free. You cannot get better unless you go gluten-free.

2. Your microbiome is likely destroyed and you might be headed for C. Diff. The only good news about that, is that if you get C. Diff, then you become eligible for an FMT, which has a huge potential to fix a lot of what you are going through.

3. You need to find a good gastro who is more available, since you have several gastro problems going on. This is key. If none in your area, try to find one who can see you soon who is out of state.

[ShawnCeliac]

I am so sorry to hear about what you are going through.  Perhaps consider a Functional Medicine physician for your next primary doctor in addition to your specialists.   Usually someone practicing Functional Medicine is already a board certified Family Medicine or Internal Medicine physician who has received this additional training and perspective.  They like to get to the root cause of symptoms and disease.