Wondering if you had any follow up for us on this. My serotonin and gastrin levels just came back elevated but have yet to hear from GI what the next step is going to be. My genetic test was also positive(first positive test other than chronically elevated lymphocytes, elevated esr and crp, and electrolyte abnormalities but no real "celiac" tests were positive bc I refused to eat it ever again!), so perhaps he'll believe me this time that it's not all "stress and depression" (even though I am one of his colleagues). So frustrating.
I too am vigilant about allergen free-none of seven common allergens plus some others we've discovered. But still having excruciating right upper quadrant pain and almost pure watery stools up to 15 times a day. Entocort may help a little but not much. Prednisone definitely helps but there are so many awful side effects. I've been going up and down on these for 7 months now w no remission. Also have to take narcotics and muscle relaxers which I hate, but keep me out of the hospital.
To be honest I think there's a spectrum from intolerance to Crohns and if they can't get this under control, I'm headed for crohns. This week the ruq pain has been so severe it literally takes my breath away and I'm barely eating to prevent more pain (feels like pouring rubbing alcohol on a terrible road rash).
Hopefully someone has had these results and can tell me if your MD blew them off or searched for a neuroendocrine secreting tumor.
I am wondering about the carrots and Vitamin A myself. I figured it out by doing an elimination diet. Actually I did 3 different elimination diets over the past 3 years. Always found something new that I hadn't figured out before too. I was really surprised when I added carrots to my diet at one point and had a bad GI reaction. I tried them several times later to be sure and it was always bad news. There are a few people on the board that have carrot problems besides me. I don't have an allergy type reaction to them, but other people do.
For people that have allergy (IgE) reactions, there is a cross reaction possible for quite a few foods. I think it makes sense that the same kind of cross reaction is possible in food intolerance type reactions. At least, I haven't seen any rule carved in stone saying it isn't possible. If you search for allergy and cross reaction you can find lots of lists of lists of them.
Pollen-allergic patients frequently present allergic symptoms after ingestion of several kinds of plant-derived foods. The majority of these reactions is caused by four distinct cross-reactive structures that are present in birch pollen. Proteins that share common epitopes with Bet v 1, the major birch pollen allergen, occur in pollens of several tree species: apples, stone fruits, celery, carrot, nuts, and soybeans. Approximately 70% of our patients who are allergic to birch pollen may experience symptoms after consumption of foods from these groups. In contrast, two minor allergenic structures-profilins and cross-reactive carbohydrate determinants (CCD)-that sensitize approximately 10-20% of all pollen-allergic patients are also present in grass pollen and weed pollen. Moreover, IgE-binding proteins related to the birch pollen minor allergen Bet v 6 have been found in many vegetable foods such as apple, peach, orange, lychee fruit, strawberry, persimmon, zucchini, and carrot. Frequently, the occurrence of cross-reactive IgE antibodies is not correlated with the development of clinical food allergy. In particular, the clinical relevance of sensitization to CCD is doubtful. Generally, pollen-related allergens tend to be more labile during heating procedures and in the digestive tract compared to allergens from classical allergenic foods such as peanut. However, recent DBPCFC studies have shown that both cooked celery and roasted hazelnuts still pose an allergenic risk for pollen-sensitized subjects. Since pathogenesis-related proteins share several common features with allergens and both the Bet v 1 and the Bet v 6-related food allergens are defense-related proteins, approaches to introduce such proteins as a measure to protect plants against diseases should be performed with caution as they may increase the allergenicity of these crops.
I wonder if this means celiacs shouldn't be taking large amounts of vitamin A in pills? Although if the negative effect only happens with gluten is present, maybe it doesn't hurt anything. It could be a good reason not to take a multi-vitamin when glutened by accident though. OR to avoid foods high in Vitamin A when glutened.
I can only speak for myself, but I don't take any supplements anymore. Think about it logically for a minute. Why, if most food we eat is fortified with artificial vitamins, is it necessary to take an additional multivitamin?
Why can you overdose on fat soluble vitamins taken as supplement and pills, but it's impossible to overdose on a vitamin from natural sources??? Example vitamin A pills and eggs. You never hear of people who eat a ton of eggs having vitamin A overdoses but if you take too many vitamin A pills, you can get deathly sick.
Think about B vitamins. If you eat natural sources, you ingest it all and it's well absorbed. But if you take a B complex vitamin, you pee it out in an hour. Never happens in the natural form does it???
There have to be natural coenzymes and cofactors for our body to process and use vitamins. When they are in their artificial form, they dont have these and are simply ridded of by the body.
That is an interesting connection between Vitamin A retinoic acid causing more inflammation when they thought it would be anti-inflammatory. This may speak to why Accutane (retinoic acid derivative of vitamin A) is now being implicated in "causing" intestinal disorders like Chron's, Celiac and IBS.
I just spoke to the lawyer who is among the group processing the huge case up in NJ right now with the actor from " A Few Good Men ". This actor has a diagnosis of celiac and IBD, not crohns or UC. The lawyer was VERY interested in my case and the research out of the University of Chicago, ironically where I did my residency. Go here to see the recent press release from the University of Chicago. http://www.uchospita...ac-disease.html
His name is Van Robichaux and his website is www.accutanenews.com. He is asking that any one who took accutane or its generics and later developed Celiac disease go to the website and register your case. it's too expensive to try one single case, such as mine, but they are very interested in getting a group if cases together. Not a class action, but 5-10 cases to be tried together. I know I am not unique in my experience. This could get the word out about this horrible connection.
I am in no way affiliated with this law firm. I'm simply a doctor who took accutane during my residency training bc I had severe outbreaks at that time. I now know it was probably wheat related, but I was healthy still until after the accutane. Now I'm unable to do a job that I love and trained for my whole life. I KNOW if it's this easy to induce celiac with accutane in mice that Roche should have known but hid these side effects, causing immense pain and suffering for many of us. I spoke with five other law firms advertising on celiac sites and no one else could even spell celiac. They were only interested in Crohns or UC.
If you have any questions, email me. Tysonholly@hotmail.com. And if you are a moderator, please help me spread the word about registering these cases. There is nothing in it for me except justice and education.
Welcome, Doctor... and I hope you're feeling much better! First...thanks for joining our discussion and telling us you're a doctor. Quick question for you... Do you have any suggestions for how we can get our "uninformed" doctors to read up, or learn or take us seriously? It seems many of them are insulted, or just make people feel like they're crazy rather than doing the job they are paid to do. What would be the best approach? Any thoughts?
Thanks for the warm welcome! I'm honored to be a part of such a smart, well informed, caring community and I know we can make this a well known disease!
This is a tough question, and one that I'm currently grappling with. In the hospital, J ( my amazing fiancé) and I would print out the information from respected institutions and journals and have it ready to be handed out during rounds. The med students ate it up, but it was a mixed bag from the attendings. Some didn't like feeling like they were being taught by the patient, but some were receptive and admitted they didn't know much about the disease. The ones who chose to remain ignorant were quickly replaced. We have a saying, that everyone needs to be " on board" and those who aren't are not allowed to treat me. by the end of my stay, the nurses and techs were printing things for each other, and almost everyone was learning about celiac. This is how we can get the word out and make it a well known disease, not a mystery.
So I would try to bring something educational to the provider. If they seem uninterested, find some one else. Think outside the box. I'm currently trying an allergist and internal medicine doc, bc there are no GI guys here that are helpful. The last one I called tried to schedule me for a HIDA scan of my gallbladder and and upper endoscopy before I'd even had an office visit and met him! Uh, no thanks!