Newly Diagnosed and Spiraling

[meginchicago]

Hi everyone, 

It’s a long story but after I almost passed out at work (I’m an occupational therapist in a SNF) I was found to be iron deficient anemic. My primary pretty quickly did some blood tests and within a week those indicated celiac. Hematologist did more in depth bloodwork, showing normal folate and B12 but low vitamin D. 
 

I started to have daily chest pain mid October that never went away so I’ve had countlesss EKGs (normal) and an echo that showed just very mild mitral valve prolapse. I’ve had to wear the halter monitor for 2 weeks which just showed some benign palpitations (my mother has both of these things as well). Started taking omeprazole, mostly resolved. 

On 11/12/20, I had a colonoscopy/ endoscopy confirming celiac and microscopic colitis. A lot of inflammation. Started the gluten free diet (with a few slip- ups of course).  11/13/10 and 11/20/20 I had two IV iron infusions (injectifer) to remedy the anemia. On 12/4/20, I was in the ER with weakness, weight loss, loss of appetite and found to have severe hypophosphatemia. Doing research, the IV iron brand I received has been found to commonly cause that. My hematologist has since apologized stating she only sees that in malnourished patients. Started taking Phos- Nak to fix that on top of liquid multivitamins, liquid B12, and liquid vitamin D. With lab tests in between then and now, the iron levels are normal but high ferritin which my hematologist says is normal. My phosphorus was normal but has plunged again so I’m again taking the Phos- Nak.  
 

I’ve had multiple visits with a psychologist to start therepy/ psychiatrist throughout all this and now also on Lexapro.  My anxiety Is through the roof I’ve had quite a few panic attacks.

I feel awful, I have daily tension headaches and I always feel like I’m going to pass out. I began having a red bumpy rash all over my body and have seen the derm who did a biopsy but she didn’t think it fit the bill of DH. Haven’t heard anything official on that though. 
 

1/1/20 and today 1/2/20 I have gone back to the ER because my head felt absolutely terrible. Like I wasn’t on this planet and I couldn’t function. I almost passed out on the toilet seeing stars. Got a CT, showing nothing. Aside from elevated BUN/ creatinine indicating dehydration and a dip in my phosphate level, my blood work is fine. The ER doctor strongly believes this is a celiac issue. My primary GI, hematologist, and primary have all just told me to be gluten free and wait throughout all this. As of today, I am starting the process of going on short term disability at the age of 24. 24 years old. I understand I have celiac but I’m terrified. Trying to get into a celiac specialist here at U of Chicago but in the meantime I’m suffering and scared. If anyone has any ideas please help!

[trents]

Welcome to the forum, Meg!

Wow, you are trying to cope with a number of stressful situations and no wonder you feel overwhelmed.

I don't have any great advice for you except to double down on your efforts to make sure you are not getting small amounts of gluten from cross contamination and starchy fillers in meds and supplements. Research all those things.

Avoid eating out because you have much less control over ingredients and cross contamination than you do fixing your own food at home. 

Avoid processed food as much as possible and eat simple, basic food like fresh meat, eggs and vegies. The community is discovering that even processed that is labeled gluten-free often doesn't live up to it's billing. Also, it's advisable to look for the "Certified Gluten Free" label as opposed to just "Gluten Free." There are stricter testing standards involved with the former.  

Finally, avoid even gluten-free oatmeal for the time being. About 10% of celiacs react to oats (even gluten-free oats) like they do wheat, barley and rye.

Oh, yes. Celiacs have a high probability of developing allergies/intolerances to non gluten containing foods. Commonly, it is to dairy and soy but it can be to almost anything. Celiacs have dysfunctional immune systems from "leaky gut syndrome." Keep an eye out for other foods you may be reacting to. Maybe keep a food diary to help in identifying offending foods.

[RMJ]

I’m sorry you feel so awful now, physically and mentally.  But I see a lot of good things in your post.  Your doctors caught the celiac so quickly!  Sometimes people take years to get a diagnosis. You were diagnosed when young - you haven’t had uncontrolled celiac for decades like some. A lot of your symptoms could be from being malnourished, which you are with celiac disease. Even your anxiety may be a symptom of celiac disease which means it could go away once you are healed and absorbing nutrients properly.

I agree with trents to be super gluten free.  Eat easily digested and absorbed foods to get the nutrients you need. You might ask to see a dietician who specializes in celiac disease.

Come here whenever you need support.  You can rant about the changes this has caused in your life.  We’ll understand. It will take some time to heal and feel healthy again, but you’ll get through this.

[GFinDC]

Hi Meg,

Hopefully Ennis_TX will pop in for advice.  He also has MC and celiac.

I believe he avoids some veggies but not sure which ones.  Trents gave some good advice.  A simple diet without spicy foods may help.  Also some common food intolerances might show up like nightshades, corn, oats, dairy, eggs, soy etc.  You can look up lists for the top ten food allergies in the USA and top 14 or so in Europe.  All of those would be likely foods to eliminate from your diet for a while.  A good way to go IMHO is to choose 5 simple whole foods that work for you and stick with them for a week or 2 or whoever it takes to get your GI system settled down.  Then slowly add one test food each week. It's a slow somewhat boring process but it works.

Sugar and carby foods like potatoes and rice can be problems.  Carbs are converted to sugars very quickly.  Bacteria feed on sugars and can multiply rapidly causing GI symptoms.

You might want to ask your doctor if Betaine HCL with pepsin is ok to take.  Betaine HCL with pepsin can help digest proteins.  It is not a bad idea to find a trace mineral product also.  Or some kind of mineral/vitamin combo.

I hope you feel better soon Meg!   

[cristiana]

Hi Meg

Welcome to the Forum.  You are going through such a lot at the moment, I'm so sorry. 

Some people are very sick indeed at the time of diagnosis, others feel perfectly well and the diagnosis comes as a complete surprise as an incidental finding.  Some recover really fast, others it's a slower journey.  But it is so good that they have arrived at least arrived at a diagnosis.

Lots of good advice above, but I just wanted to say that I too have a strange rash which isn't DH.  Mine has come on in the last few months and it appears to be some sort of contact dermatitis/eczema.   Have you been advised if there is anything you can used to help?  Does yours itch?  My own gastroenterologist tells me that a lot of "coeliacs get itchy skin" - quite apart from DH.

As I say, mine is not DH but if I really moisturise my skin every day and apply a topical steroid occasionally I can keep on top of it.  I stop this, and it comes back.   I really hope you have been given some help on how to cope with your own rash as they can be so uncomfortable. 

Cristiana

 

[Posterboy]

On 1/2/2021 at 6:15 PM, meginchicago said:

It’s a long story but after I almost passed out at work (I’m an occupational therapist in a SNF) I was found to be iron deficient anemic. My primary pretty quickly did some blood tests and within a week those indicated celiac. Hematologist did more in depth bloodwork, showing normal folate and B12 but low vitamin D. 

 

On 1/2/2021 at 6:15 PM, meginchicago said:

On 12/4/20, I was in the ER with weakness, weight loss, loss of appetite and found to have severe hypophosphatemia.

MeginChicago,

They missed it!

Hypophosphatemia is a classic sign of Refeeding Syndrome.

Here is a nice overview on it...

https://www.medicalnewstoday.com/articles/322120

Also check your medicines.....it it can be triggered by bad medicine combination....

I didn't take Diuretics for this reason.

See this article on the drugs interaction that can trigger hypophosphatemia

Entitled "Medication-induced hypophosphatemia: a review"

https://academic.oup.com/qjmed/article/103/7/449/1585359

I would say if your drink any alcohol stop it immediately.

If people are not drinking when it happens then  Refeeding Syndrome is normally missed.

The poor nutrition of Celiac disease can also trigger it.

I had many of the same symptom's one.....and to no surprise they missed it in me too!

I wrote a Posterblog post about my experience with Refeeding Syndrome maybe it will help you to read it.

I would probably stop eating Milk too if you have been eating it as well.

Milk can trigger the same reaction as Gluten in Celiacs, at least in a percentage of Celiac's.

It is estimated that lactose is common in about 40% of of those of Asian descent.

It is possible that those gluten free patients still not recovering on a gluten free diet is also suffering from Lactose intolerance.

Here is a nice article about a kid who not only had Celiac disease but who also had Refeeding Syndrome due to Milk in their diet.

Hypophosphatemia is considered one of the last steps of Starvation!

And why you see bloated Biafra babies that are severely Malnourished with swollen and distended bellies.......because they have filled up with fluid!

This is all I have time for tonight....but your symptom's were so severe and being missed that I thought I needed to respond right away.

I would probably go back to the ER and tell them you have Refeeding Syndrome and take the Medical News article back with you......so they know what to look for!

I hope this is helpful but it not medical advice.

Posterboy,

[ryancfmurray]

I'm sorry you feel that way.

[DJFL77I]

It is very sad to hear a diagnosis from a doctor, but it is even worse when doctors can't make a diagnosis.