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Disapointed...

Bigbread

By Bigbread
in Coping with Celiac Disease

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Bigbread Rookie
Bigbread
Posted

Damn, I

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mushroom Proficient
mushroom
Posted

I am sorry you didn't get the definitive answer you wanted :( So many of us don't. But hey, if the gluten free diet makes you recover, then isn't that an answer in itself?? :) And whoever told you you could eat rye ought to be shot because the gluten in rye is the same as the gluten in wheat, as is the gluten in barley. Some celiacs tolerate certified gluten free oats; some do not.

If you have itching and burning and red patches that scar when they heal, that really does sound suspiciously like dermatitis herpetiformis, which is the skin form of celiac disease. People with DH will often test negative on the blood tests. The way to test for dermatitis herpetiformis is to find a dermatologist who is familiar with it, and who will take a biopsy adjacent to (not ON) the lesion, because the antibodies will be found in the adjacent tissue. A diagnosis of DH is a diagnosis of celiac. What have your doctors said about these red patches that scar? Do they have little blisters in them? Has anyone given you a diagnosis of what they are? Maybe that should be explored - it could give you your definitive answer.

Dixiebell Contributor
Dixiebell
Posted

Hi Bigbread. Have you been to a derm. for a biopsy of that rash? Sounds like you could possibly have DH. If you have DH then you have celiac. If you can get a biopsy, they need to do it beside the break out not the break out itself.

Bigbread Rookie
Bigbread
Posted
  • Author

Thanks for the posts.

My skin has been diagnosed with acne. It doesn't matter what my skin looks like Dermatologists(are the worst- been to 6) say all forms of skin problems are acne and food does not cause skin problems. Expect Exzema should not drink milk. They even refuse tests and wont' listen to other symptoms. Even when I got a bad reaction to homeopathic meds that caused my skin to scar I was told its acne. I honestly dont think they know what to do if the 3 acne meds dont work. Which I can tell you it doesn't on me.

The worst part is honelty the part where they dismiss me as if I'm a todler then I know they have no idea what they are looking at. I've been to 25 docters in total. So I am really tired. If this doesnt work I don't know what will.

mushroom Proficient
mushroom
Posted

I know what you mean about dermatologists, they suck - I won't go back to mine; I hate that woman! She told me not to stop a medication I was taking for my RA even though it was making my psoriasis so much worse. Ha, what did she care? It was no skin off her nose, only mine :blink::lol:

Seriously, though, will no one take you seriously? Do you have someone who could go to the appointment with you and be an advocate for you, and not allow the doctor to be so dismissive? It is so ridiculous so say that food does not cause skin problems; almost all my skin problems (except the cancers :o ) have been caused by food. What a bunch of bunk. I think doctors become dermatologists because they aren't bright enough to be anything else :rolleyes: Okay, end of dermatologist rant.

Skylark Collaborator
Skylark
Posted

If you go off gluten and all your problems go away, that will have to be a "diagnosis". Actually what you describe could be more allergic than celiac and the definitive test for allergies is elimination and challenge. Try the diet and see what happens. good luck!

cassP Contributor
cassP
Posted

i had Excema on my foot for 5 years- it itched so bad i would scratch till it bled.. it was horrific. it went away when i took wheat out of my diet a decade ago... not milk.

your diet can most definitely affect your skin. i hope you find the answers you want and feel better :)

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tarni Rookie
tarni
Posted

Hi Bigbread, yes Damn indeed! I

Monklady123 Collaborator
Monklady123
Posted

Yep, just go gluten-free and if you feel better then that's your "diagnosis". I've opted not to have the endoscopy because I don't want to go through several months of eating gluten every day. For me it's simple -- if I eat gluten I feel awful, if I don't then I feel good.

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    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
    • Aretaeus Cappadocia
      Gluten free nuts

      By Aretaeus Cappadocia · Posted

      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies also indicate the amount of gliadin in human breast milk is miniscule and unlikely to cause reactions:  https://www.glutenfreewatchdog.org/news/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/ I would also point out that Dr. Peter Osborne's doctorate is in chiropractic medicine, though he also has studied and, I believe, holds some sort of certifications in nutritional science. To put it plainly, he is considered by many qualified medical and nutritional professionals to be on the fringe of quackery. But he has a dedicated and rabid following, nonetheless.
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted, still intact and immunogenic, into the milk. The cow's digestive system is designed to break down proteins, not transfer them whole into milk. This is not a recognized pathway in veterinary science. The provided backup shifts from cow's milk to human breastmilk, which is a classic bait-and-switch. While the transfer of food proteins in human breastmilk is a valid area of study, it doesn't validate the initial claim about commercial dairy. The use of a Dr. Osborne video is a major red flag. His entire platform is based on the idea that all grains are toxic, a view that far exceeds the established science on Celiac Disease and non-celiac gluten sensitivity. Extraordinary claims require extraordinary evidence, and a YouTube video from a known ideological source is not that evidence."  
    • Wheatwacked
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Wheatwacked · Posted

      Some backup to my statement about gluten and milk. Some background.  When my son was born in 1976 he was colicky from the beginning.  When he transitioned to formula it got really bad.  That's when we found the only pediactric gastroenterologist (in a population of 6 million that dealt with Celiac Disease (and he only had 14 patients with celiac disease), who dianosed by biopsy and started him on Nutramegen.  Recovery was quick. The portion of gluten that passes through to breastmilk is called gliadin. It is the component of gluten that causes celiac disease or gluten intolerance. What are the Effects of Gluten in Breastmilk? Gliaden, a component of gluten which is typically responsible for the intestinal reaction of gluten, DOES pass through breast milk.  This is because gliaden (as one of many food proteins) passes through the lining of your small intestine into your blood. Can gluten transmit through breast milk?  
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