My path to self diagnosis, and the big mistake I made.

[AuroraLake]

 It started exactly one year ago, March 2021. Just months prior to this huge rash spreading slowly across my face, I had undergone two back to back rounds of hardcore antibiotics for a tooth infection. I now understand now that this was the "trigger". In the following 4 months, I saw 5 different Dr's, was put on a 10 day course of anti virals, it did nothing, 3 months later, the rash is even worse, all the Drs are now shaking their heads, and say I have no idea what this is. Its now running ear lobe to the corners of my mouth and either side of my chin. It is also next to the corner of both the outside corner of both eyes. New patches of blisters everyday. Also at the same time, Im treating myself for adreanal fatigue, I had double vision, nausea 24/7 for over 15 years, urinary incontinence. And suddenly unreal fatigue, oh and something I call "the hot/colds" my body could not regulate its temp. I would be freezing one moment, and in the next Im drenched in sweat, aaand right back to freezing again. It drains you of any energy, very quickly. I had to plan my path when I was on my feet because I felt as though my legs would buckle. I had asked for B-12 shots, and my Dr said no, "studies say vitamines are bad". I finally made a desperate run to my local supplement store, and buy womens vitaminns a whole host of supplements, it took a little time but I started feeling better. But still this RASH ACROSS MY FACE!!!!.

 I ended up speaking with a guy I know who is an N.P.  who mentioned a term I had never heard before. "Functional Medicine". and that maybe I should read up on S.I.B.O.  Im a retired EMT . So thats exactly what I did. Im desperate at this point and 5 Drs in my very small town are shrugging their shoulders, but not trying to find a cause either, no blood tests were asked for, no tissue samples taken, no allergy tests. I was on my own.

 It seemed easy enough, a simple diet change, no big deal. Even it it wasnt SIBO, It sounded healthy, and I didnt not need a prescription to see if it would work.  Keep in mind, Celiac Disease was not even a thought in those months. But heres the part where I kind of screwed myself. I dropped gluten, as part of the recommended SIBO diet. Anyway, about 2 weeks in my other 1/2 made these irresistable warnm fluffy biscuts, they were small, and I thought 2 biscuts for one evening wouldnt be that big of a deal.  Boy howdy, was that a mistake, it put me on the floor within 6 hours, it was a kind of pain I cannot to put into words. It felt as though some pulled a cheese grater through my entire G.I. tract. And left in in bed in a ball unable to eat much, for about 5 days, and BANG, my sores are now flaring, weeping unreal amounts of clear liquid, and went angry red. That reaction to those biscuts, told me this is not SIBO, besides the fact that SIBO dose not come with a rash. 

  I had even been looking at different illness that caused a rash, with images of the rash. But after the biscut incident of 2021, lol, I Googled, "Celiac Disease of the skin", and bang like that I found the keys to the kingdom. The answer to what was so wrong. Im telling them (my Drs), "I am sick, sick, sick." "My body is screaming FIRE!" There is something seriously wrong. And they are doing absolutely 0 about it. 

  I FINALLY, I knew what was wrong. So I went to the Dr and said "I know what is wrong, but Im not sure that a test will show it because Ive been gluten free about a month now." He said a blood test should, and I went for a blood draw. He set me up to get the lesions biopsied. When I got home I Googled that, and found out he had no clue what he was saying, because in under 30 seconds, I found out you have to be on a gluten inclusive diet eveyday for 6 weeks for it to show up. Oh, and just last month the clinic who was to do the biopsy to check for Durhing, finally called to schedule my biopsy, 8 months later.... 😳😷😖. 

  Anyway, long story, my rash today is currently one tiny spot on my right cheek. In retrospect, I believe I have had it my whole life.  I am much better, but I am struggeling, because I do not know if my body is getting enough nutrition. I could not keep up with the massive doses of vitamins, so I have switched to gluten free vegetarian vitamines. They have much more of everything than a simple "one a day" type vitamin, for me anyway. 

  I need to get an endoscopy done, that, at this point is my only hope for diagnosis.  The advice I heard from an RN with DH, is that if you have lesions on your body,  you have them in your intestines, and to wait 6 months to a year. So that is where I am now. I need to make the appointment, but have lost faith in my Drs, and have my doubts that they will schedule one for me. Very frusterated to learn that Dr's are not trained in diagnosing this illness, I mean my NAFL, should have been a major clue to my Dr. All of my G.I. issues, were red flags. I kid you not, one of them actually said "you clearly know far more about this than I do." When I threw out terms like IgA protines. 

  I do have one question, that time will answer I suppose. It is, If I get another DH outbreak, will it always choose my face first to appear.😬🥺😨

  Not sure I will ever have an "Official Diagnosis" but I know 100% I am correct. My face is proof, all my other symptoms are now gone, after malnutrition being addressed. However, without the proper diagnosis, no one will test to see what my body is lacking. I can only say Thank God for Google, and for all of you who lead me to the answer, so I could start healing. Not quite 100% yet. Ive gotten "glutened" a couple of times. Last time when it snowed. Who knew cat litter has gluten. Sheesh. 

[trents]

Welcome to the forum, AuroraLake! We are both Washington residents.

This might help:

There are some celiacs who have DH without damage to the small bowel villi.

Yes, there is an appalling lack of knowledge among general practitioners with regard to celiac disease. Many on this forum will attest to that. It is slowly improving.

[Scott Adams]

Welcome to  the forum!

It is really sad that your doctors are so ignorant about DH and celiac disease, as it is one of the most common autoimmune diseases on Earth...at least 1% of people have it, and around 10% have non-celiac gluten sensitivity (no tests are available yet for NCGS). 

In any case, it sounds to me like you've found the culprit even without your doctors, and I also see no reason for a formal diagnosis, especially given your clear symptoms that are extremely uncomfortable, but go away on a gluten-free diet, and come back when you eat gluten.

It might be a good idea to find new doctors, and of course, stay 100% gluten-free. 

[Wheatwacked]

On 3/10/2022 at 7:07 PM, AuroraLake said:

"studies say vitamines are bad"

It impedes the profit margin

The damaged villi don't absorb vitamins well and eventually can get to the point of malnutrition and misdiagnosis. You may have multiple vitamin and mineral deficiencies but these three are a place to start.

On 3/10/2022 at 7:07 PM, AuroraLake said:

my NAFL, should have been a major clue

Start taking Phosphatidyl Choline.  Choline an essential nutrient that is absorbed in the small intestine so is one of many (including the B's) affected by malabsorption due to Celiac Disease. Non Alcoholic Fatty Liver Disease is often caused by insufficient Choline in the diet. Most Americans do not eat enough.  For example to get the minimum daily amount (100% RDA = 550 mg per day), one needs to eat every day about 4 ounces of pan fried beef liver, or 4 large eggs or 10 cups of cooked broccolli or a 14 ounce steak. 90% of the mitochondria surface is made of phosphatidyl choline. Choline works with folate to process homocysteine (cardiovascular disease indicator) and reduce neural tube disorders in embryos, acetylcholine is important for nerve transmission. The safe upper limit is 3000 mg per day, but side effects (fishy body odor and lowered blood pressure) don't usually occur until 7000 mg per day.  The faster you replenish the better you'll feel.  https://ods.od.nih.gov/factsheets/Choline-HealthProfessional/

Raise your vitamin D Plasma to >80 ng/ml.  Most people with autoimmune disease test low, D is absorbed in the small intestine (Celiac) and some research indicates that higher plasma levels modulate the Celiac genes. For me it takes 250 mcg vitamin D3 a day 10,000 IU) to maintain.  Before the industrial revolution we spent most of our day in the sun without SPF creams so we made lots of D.   https://www.mayoclinicproceedings.org/article/S0025-6196(15)00244-X/pdf.

Raise your Thiamine (B1) intake to over 300 mg a day for a few weeks to see if you are thiamine deficient. Wheat flour is thiamine fortified, Celiac Disease causes malabsorption so chances are very good you are very low on thiamine.

Quote

The accepted standard for diagnosing TDD [thiamine deficiency disease] in the absence of biochemical analysis is “clinical response to thiamine” (50−100 mg dose).74 A case definition would be based on the combination of presenting clinical features that are most predictive of clinical response to thiamine. As the research and clinical surveillance evidence base expands, TDD definitions may be refined, but should still serve as a guide to indicate when empirical treatment with thiamine should be encouraged, particularly as there is no known risk to treatment and the cost of treatment is relatively low.   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6392124/

Quote

Vitamin B1, or thiamine, supports normal cell function and helps your body convert food into energy. Thiamine overdose symptoms are unlikely to occur because this vitamin will be excreted in urine when consumed in excess. Vitamin B1 deficiency, on the other hand, can be a lot more harmful.    https://www.livestrong.com/article/367247-vitamin-b1-overdose-symptoms/

 

 

Edited March 13, 2022 by Wheatwacked

[RedFacedJock]

Your Adrenal Fatigue may actually be Anaemia. It's not uncommon to have an iron deficiency when it comes to Celiac Disease. I was having many of the same symptoms until I started taking stand alone Iron and Folic Acid supplements. The fatigue went away after only a few days for me.

[Anniehall]

On 3/10/2022 at 6:07 PM, AuroraLake said:

 It started exactly one year ago, March 2021. Just months prior to this huge rash spreading slowly across my face, I had undergone two back to back rounds of hardcore antibiotics for a tooth infection. I now understand now that this was the "trigger". In the following 4 months, I saw 5 different Dr's, was put on a 10 day course of anti virals, it did nothing, 3 months later, the rash is even worse, all the Drs are now shaking their heads, and say I have no idea what this is. Its now running ear lobe to the corners of my mouth and either side of my chin. It is also next to the corner of both the outside corner of both eyes. New patches of blisters everyday. Also at the same time, Im treating myself for adreanal fatigue, I had double vision, nausea 24/7 for over 15 years, urinary incontinence. And suddenly unreal fatigue, oh and something I call "the hot/colds" my body could not regulate its temp. I would be freezing one moment, and in the next Im drenched in sweat, aaand right back to freezing again. It drains you of any energy, very quickly. I had to plan my path when I was on my feet because I felt as though my legs would buckle. I had asked for B-12 shots, and my Dr said no, "studies say vitamines are bad". I finally made a desperate run to my local supplement store, and buy womens vitaminns a whole host of supplements, it took a little time but I started feeling better. But still this RASH ACROSS MY FACE!!!!.

 I ended up speaking with a guy I know who is an N.P.  who mentioned a term I had never heard before. "Functional Medicine". and that maybe I should read up on S.I.B.O.  Im a retired EMT . So thats exactly what I did. Im desperate at this point and 5 Drs in my very small town are shrugging their shoulders, but not trying to find a cause either, no blood tests were asked for, no tissue samples taken, no allergy tests. I was on my own.

 It seemed easy enough, a simple diet change, no big deal. Even it it wasnt SIBO, It sounded healthy, and I didnt not need a prescription to see if it would work.  Keep in mind, Celiac Disease was not even a thought in those months. But heres the part where I kind of screwed myself. I dropped gluten, as part of the recommended SIBO diet. Anyway, about 2 weeks in my other 1/2 made these irresistable warnm fluffy biscuts, they were small, and I thought 2 biscuts for one evening wouldnt be that big of a deal.  Boy howdy, was that a mistake, it put me on the floor within 6 hours, it was a kind of pain I cannot to put into words. It felt as though some pulled a cheese grater through my entire G.I. tract. And left in in bed in a ball unable to eat much, for about 5 days, and BANG, my sores are now flaring, weeping unreal amounts of clear liquid, and went angry red. That reaction to those biscuts, told me this is not SIBO, besides the fact that SIBO dose not come with a rash. 

  I had even been looking at different illness that caused a rash, with images of the rash. But after the biscut incident of 2021, lol, I Googled, "Celiac Disease of the skin", and bang like that I found the keys to the kingdom. The answer to what was so wrong. Im telling them (my Drs), "I am sick, sick, sick." "My body is screaming FIRE!" There is something seriously wrong. And they are doing absolutely 0 about it. 

  I FINALLY, I knew what was wrong. So I went to the Dr and said "I know what is wrong, but Im not sure that a test will show it because Ive been gluten free about a month now." He said a blood test should, and I went for a blood draw. He set me up to get the lesions biopsied. When I got home I Googled that, and found out he had no clue what he was saying, because in under 30 seconds, I found out you have to be on a gluten inclusive diet eveyday for 6 weeks for it to show up. Oh, and just last month the clinic who was to do the biopsy to check for Durhing, finally called to schedule my biopsy, 8 months later.... 😳😷😖. 

  Anyway, long story, my rash today is currently one tiny spot on my right cheek. In retrospect, I believe I have had it my whole life.  I am much better, but I am struggeling, because I do not know if my body is getting enough nutrition. I could not keep up with the massive doses of vitamins, so I have switched to gluten free vegetarian vitamines. They have much more of everything than a simple "one a day" type vitamin, for me anyway. 

  I need to get an endoscopy done, that, at this point is my only hope for diagnosis.  The advice I heard from an RN with DH, is that if you have lesions on your body,  you have them in your intestines, and to wait 6 months to a year. So that is where I am now. I need to make the appointment, but have lost faith in my Drs, and have my doubts that they will schedule one for me. Very frusterated to learn that Dr's are not trained in diagnosing this illness, I mean my NAFL, should have been a major clue to my Dr. All of my G.I. issues, were red flags. I kid you not, one of them actually said "you clearly know far more about this than I do." When I threw out terms like IgA protines. 

  I do have one question, that time will answer I suppose. It is, If I get another DH outbreak, will it always choose my face first to appear.😬🥺😨

  Not sure I will ever have an "Official Diagnosis" but I know 100% I am correct. My face is proof, all my other symptoms are now gone, after malnutrition being addressed. However, without the proper diagnosis, no one will test to see what my body is lacking. I can only say Thank God for Google, and for all of you who lead me to the answer, so I could start healing. Not quite 100% yet. Ive gotten "glutened" a couple of times. Last time when it snowed. Who knew cat litter has gluten. Sheesh. 

Damn girl. Get a female doc that's going to work for you and test for what you ask for. If my doctors fighting me I go to the next one. Luckily my current doctor ran all the tests I've asked for so far. Thank God. I'm in Louisiana though and you don't even need referrals to see specialists here. Laid back Louisiana.

[Wheatwacked]

On 4/20/2022 at 6:57 AM, RedFacedJock said:

Adrenal Fatigue

Adrenal Fatigue is considered by many as quackery. Adrenal Insufficiency however is an official diagnosis. I have Secondary Adrenal Insufficiency from the prednisone I had to take for the fibromyalgia. The fibromyalgia got better with GFD, but the insufficiency stayed. I went from 30 mg/day pre-GFD to 5 mg maintenance.