GI Consult Tomorrow - Help?

[stephm 2]

GI Appt tomorrow; anything that I should know or keep in mind?

Background Info:

• Summer 2015: Extremely dry, flaky skin and scalp leading to dandruff. Lotion, vaseline, steroidal medications did pretty much nothing. Visited derm and all they prescribed me was dandruff shampoos (?).
• March 2016: Possibly DH, red, blistery and symmetrically patterned rashes that itched until they bled. Also had dry and creased skin in those areas.
• April-May 2016: Gluten-free diet for ~3 weeks, no change in skin conditions. Went back on gluten, noticed changes in stool (i.e. diarrhea, yellowish colour). When eliminating gluten again (after ~3 weeks off gluten), stools normalized. After prolonged gluten-free (4-6 weeks), skin went back to producing oil, scalp also started to produce oil and dandruff disappeared. When reintroducing gluten for ~3 weeks, change in digestive symptoms but not much in skin (rash came and went whenever it wanted). After a long period of time eating gluten, hair stopped producing oil (bad dandruff again) and skin became dry again.
• May 2016: Visited other derm for DH, said it was only eczema and gave me many steroidal creams. Didn't work for long term.
• June-November 2016: Back on gluten because I wanted to get tested.
• August 2016: New PC doctor, took symptoms seriously and suspected DH, celiac. Did blood tests for possible liver problems, thyroid to make sure. Referred to GI when came back negative ( except for borderline hypothyroid)
• November 25, 2016: Going to GI to get a consult. I have been on gluten since beginning of June. 

Note that I have been eating gluten, but not as much as I should have - slice of bread here and there, but my habits on the gluten-free diet have lead to me eating less gluten and therefore not showing as much symptoms. My rash that my PC suspected was DH has mainly gone away, because of this, but it's still here. What should I keep in mind to say to my GI? Their office says they cannot do a endoscopy right away because I'm under 18 currently (but turn of age next spring). 

 

[Awol cast iron stomach 107]

Welcome and I wish you luck tomorrow. I wanted to respond with you being new although I know many others are more experts on DH then I am. I didn't want you to go to bed without reaching out to you. As I am sure this all weighs on you.

 I am still undiagnosed Celiac/NCGS but have had many many issues and could not complete my gluten challenge (I was to eat 4 slices of bread for 14 days-I made it 6 took a break and ate a 7th day and couldn't finish) My endoscopy didn't confirm Celiac but it revealed no findings consistent  of IBS which I was diagnosed with 18-20 years ago.  I ironically gave up gluten after increasing symptoms and after I read a research study that many Celiac's/NCGS were initially diagnosed as IBS. I read it it, researched more etc and went oh my gosh I'm not IBS-I  have gluten issues.  I have many symptoms that effect many parts/symptoms of my body. I believe they relate to weather I am actively eating gluten, eating gluten-free, time between CC/gluten exposures, and thresholds. Once gluten enters me my food intolerances/sensitivties to other items begin too.

Related to DH right before my self and my husband self diagnosed me and I went gluten-free, I had what I believe was DH. My left elbow more so then right but on both. My left elbow was really red, painful, burning, unbelievable itching with 2-3 bumps as well. When I ate gluten the left elbow flared first then the right. It would subside a bit if I was not heavily eating gluten but did not go away until for good until I was truly gluten-free consistently for  months maybe even a full year. Memory hazy. Also when gluten is around I get a "keratosis pilaris" like rash on the back of my arms (as does my son). It improved when I went off gluten. It subsides in my son when he is off gluten and flares if he eats it. My son gets this eczema like rash on face and "keratosis pilaris" like on the back of his arms like me. My face I rarely get an eczema like rash but I get a "red nose/cheek" roscea like rash (doesn't itch) and on my upper chest when I eat gluten or other food related intolerance flushes. It does not itch and is very apparent because my neck stays normal. My issues improve off gluten and my son's skin improves off gluten and diary. 

Lastly I get skin issues related to gluten ingestion besides the mock like DH, roscea, keratosis pilaris, I get incredibly dry cracked heals that takes years of gluten-free diet to resolve and it causes a dry like rash on my knees too. Topical creams or physical removal does not resolve it.  It is internal it requires time, no gluten, and months of hydration, I am sure vitamin and minerals also are crucial too.  I believe that a  Dr would likely look at me with all these skin issues and diagnose with many different conditions, however I have noted that all improve by gluten-free. The face roscea and dry heals linger the longest. I ponder if all these skin issues are even separate entities or just physically manifestations of intolerance in an individual.

The other incredible hair, skin, nails issues I get with Gluten is. My toe nails get a white splotch and  white lines on my toe nails its not a fungus and it goes away after I go strict gluten-free for a year or so and the nail grows  out. Lastly my hair. Gluten changes my hair after being Glutened or CC or doing a challenge my hair begins to fall out and an abnormal than usual rate and the texture becomes poor, dry, brittle. Gluten causes my skin, hair, nails to get inflamed, dry, discolored ,fall out brittle etc. As a baby and (many family members too including my son) we had cradle cap as infants which Dr's often state  is related to eczema.

I wonder if cradle cap is early gluten intolerance to exposure in utero through mothers diet manifesting on babies head that then  improves only to progress to eczema as the child begins to eat gluten as a toddler. Maybe a researcher will look into that one day. 

I believe you will hear from some who are more  familiar with DH. I get the gold stools, D, loose stools, and C if gluten is in me. However most of my symptoms are noted but a clinical diagnosis alludes me. I have learned I must accept it and do not desire to chase a diagnose but return to a gluten-free diet after my attempt in 2016.

I most importantly wish you luck on endoscopy in the future. My end result no IBS, no clear Celiac diagnosis, but noted gastritis's and inflamed damaged esophagus. So it was left as if you think gluten is bad for you don't eat. I continue to eat gluten-free.

Good luck I hope you find your answers and if you don't sometimes you just have to listen the your gut. Cliche I know.

[stephm 2]

Thanks for the reply!

The Dr didn't say much, other than that "Dh only appears on the backs of the elbows", and since I did go to a derm he said they were the experts and he couldn't diagnose it - especially since I hadn't been eating gluten as much up 'till the appt. However, he wants to do an endoscopy in 2 weeks. He's said that even if I'm eating a microscopic amount of gluten, it should affect my body, but I'm not too sure. So I guess from now 'till the endoscopy I'll be eating a mainly gluten meal at least twice a day. Another thing he said was that it's pretty rare for an Asian person to get celiac, because we don't have the gene that usually causes it. He said it could be NCGI (Non Celiac Gluten Insensitivity) that is causing the same symptoms, but that people with NCGI don't usually have the rash. So my hope is that through eating enough gluten, I can show him the rash (which he looked up and showed me pictures of to show me what it looked like - my rash is way worse when it's affecting me)

[squirmingitch 681]

He's wrong about where the rash appears. Go to the dh section & read. The rash appears anywhere.