Could this be Celiac disease?

[MariaB]

Sorry for the long post.
I'm presently being treated for inflammatory arthritis. I'm also in remission for Non Hodgkin lymphoma (T-cell). My platelet count puts me in the thrombocythemia category and so I'm taking meds for that. Both my hematologist and rheumatologist are baffled at my consistently high platelet count.
I've had a recent colonoscopy and this showed up microscopic colitis. There's been no mention of Celiac disease and its only my own investigations (through desperation) that have brought me here.
I stopped eating gluten around 4 months ago after advice from a friend. I've been lactose intolerant for years so no lactose in my diet.
My Rheumatologist has me on Hydroxychloroqine for the arthritis, which hasn't been any help at all. I can't go on Methatrexate because my immune system is already very low.
A little about my history: From my teens I've always had this horrible blistering on my buttocks. I've used steroid cream for these flares but never mentioned it to a doctor, as I was too embarrassed. I've suffered from alopecia areata since my late 20s. My hair does eventually grow back but then it falls out again.  I've spent a fortune trying on my teeth. I've had gum problems for years and by the time I was in my early 30s, I gave in to my tooth loss from periodontal disease and had dentures. My dentist said it was so sad because my teeth were perfect, but my gums couldn't hold on to them.
I now, through my own research, realize that I likely have Celiac disease and just in case, all gluten's have been removed from my life.

Some of my symptoms which have gone on for years have improved or completely gone. I'm no longer getting that rash on my buttocks. I have been teased for years for being windy... that's gone and my hair isn't falling out at all atm, which could just mean I'm not going through a flare. My inflammatory arthritis continues though and its crippling me. I'm taking an array of long term harmful drugs to ease my arthritis, but they don't help.
My specialists have shrugged when I mention celiac disease. They've said they are happy to test me but I will need to start eating gluten again prior to a test and doing that frightens me. I also wonder if I need referring to someone who specializes in Celiac disease?
A part of me needs to know, especially for my family members. And a part of me thinks I should just self diagnose and insure a strict 'no gluten' regime.
I'm at a loss and need advice please?
 

[Wheatwacked]

1 hour ago, MariaB said:

Some of my symptoms which have gone on for years have improved or completely gone.

Hi, and welcome.

that is the self evident proof.  Even with a biopsy and blood tests it is common for folks including doctors, to believe it is in your head. The book Gluten Centric Culture: Chapter 5 Where long-held beliefs collide in familial settings. here at Celiac.com is helpful. 

Vitamin D Insufficiency and Prognosis in Non-Hodgkin's Lymphoma "Vitamin D insufficiency is common in the United States, with low levels linked in some studies to higher cancer incidence, including non-Hodgkin's lymphoma (NHL). Recent data also suggest that vitamin D insufficiency is related to inferior prognosis in some cancers, although there are no data for NHL." 

In 2012 I was in such fibromyalgia and arthritic pain I could not stand more than 10 minutes. The ONLY thing that worked was prednisone and that started working in less than an hour. Next morning pain was tolerable and kept improving. At first it took >30 mg a day to control. Two years later I started GFD and pretty quickly I was able to reduce the prednisone to 10 mg a day. Currently on maintenance of 5 mg twice a day.The two years of misdiagnosis ended up giving me secondary adrenal insufficiency. That means like a T1 diabetic needs daily insulin I need to take prednisolone because I don't make cortisol. Methytrexate is a drug to replace prednisone because prednisone is not profitable. GFD will help your arthritis. Also look to reduce the omega 6 foods in your diet. And Sudden Death is not a risk with prednisone while it is a possible side effect of methyltrexate. The optimum is 1:1. The Standard American Diet runs from 10:1 to 20:1 omega 6:3. That why products like fish oil or Omega XL works to reduce inflamation. It adds omega 3 to negate the Omega 6. Cheaper and healtier to choose less inflamatory food. White wheat flour is 22:1.

All of your symptoms will improve by improving your vitamin intake. Even the hair loss. Common deficiencies: D, B1, B3, B5, choline, folate, potassium, iodine, magnesium. Celiac Disease causes malnutrition from villi damage and avoiding foods. We suffer from the effects of autoimmune attacks from lack of D and resultant malnutrition giving upward of more than 200 possible symptoms caused by Gluten.

Your immune system is low because you are not getting enough vitamin D. Optimum is 80 ng/ml when you are getting enough.  Low D will also effect teeth and bone density, mental health. I need to take 10,000 IU a day.

Vitamin D and the Immune System "1,25 D levels are tightly regulated in a negative feedback loop. 1,25 D both inhibits renal 1-α-hydroxylase and stimulates the 24-hydroxylase enzymes, thus maintaining circulating levels within limited boundaries and preventing excessive vitamin D activity/signaling."

Too much vitamin D is rare. Deficiency is common. Ekwaru et al16 recently reported on more than 17,000 healthy adult volunteers participating in a preventative health program and taking varying doses of vitamin D up to 20,000 IU/d. These patients did not demonstrate any toxicity, and the blood level of 25(OH)D in those taking even 20,000 IU/d was less than 100 ng/mL.

Your buttocs fits with Dermatitis Herpetiformis, a rash caused only by Celiac Disease. A biopsy done by a dermatologist familiar with DH is diagnostic.

 

Edited March 22, 2023 by Wheatwacked

[MariaB]

Thank you for such a lengthy and informative reply. I too, have found the only drug that helps me is prednisone, but doctors don't want to give me this!
What is GFD?
I'm going to read the links you sent and look into omega 6. Thank you once again. 

[trents]

GFD=Gluten Free Diet

You cannot get accurate testing done unless you resume regular consumption of gluten. This is true for both the antibody testing and endoscopy/biopsy. Withdrawal of gluten will allow the villous lining of the small bowel to heal and antibodies will no longer be produced.

What you can do, however, is get genetic testing done to determine if you have the potential to develop celiac disease. Having the genes does not equate necessarily to having celiac disease but merely establishes the potential. If your physicians are unwilling to order genetic testing you can get it done through third party companies like 123 and Me. Getting a skin biopsy for DH (Dermatitis Herpetiformis) antibodies as suggested by Wheatwwacked would need to be done during a fresh outbreak I believe. DH has a characteristic appearance with little blisters in the bumps. I suggest you google for pictures of it to compare it with what you experience on your buttocks, though you might need a mirror to do that or have someone you trust take a picture during an outbreak. But again, you say that is not happening since you went on the GFD.

But, as Wheatwacked said, since you have already embarked on the GFD, and your symptoms improved, it seems you have the proof you need. Also, celiac disease is an autoimmune disorder and autoimmune disorders tend to cluster. That is, when you have one you are likely to develop others and that certainly fits you. I would look at the genetic testing as that doesn't require you to go back on gluten.

Edited March 22, 2023 by trents

[MariaB]

Thanks Trent, I think this would be a good route for me to go down. I've done a few test runs with gluten and I know how it floors me for days after, so I really don't want to start incorporating gluten into my diet again. If I'm not celiac, then, without doubt, I'm gluten intolerant.
Genetic testing on the NHS is almost impossible, so I will need to go privately....I think its worth it.

[trents]

NCGS (Non Celiac Gluten Sensitivity) is a possibility but given the fact that you already have other autoimmune disorders, my thinking is it's most likely celiac disease. But at the end of the day it doesn't matter since both require a gluten-free diet. This might be helpful to you in being thorough and consistent in avoiding gluten: