Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

New To Forum Undiagnosed But Fit The Profile...


The-Albatross

Recommended Posts

The-Albatross Newbie

I'm 50, and have moderate to severe environmental and all of the basic food allergies (milk, egg, soy, wheat, corn, peanut) and also am testing severe for glycerin... my repeat allergy testing (I did 3 years of allergic immunotherapy but have discontinued at this time) was more allergic than less. 58 of 60. I also discovered a low fracure rate gallbladder (19 percent) but have declined the surgrey at this time. Apparently I may be one of those children who went undiagnosed... I have unexplained infertility, osteopenia, was pre-diabeties, but tested normal range 6 months ago, have hypoglycemia, mouth ulcers, nose bleeds, premature aging, and multiple bone fractures as well as exzema (sp?) in my ears... frequent ear infections have gotten better because I stopped for the most part, and also use ear drops. When a doc finally ordered a RAST test, my blood histimine was 2546 (well outside normal range). Something that has changed these past couple of years, is that my fingernails have become very thin, ridges, and tear easily... I am deffinitely having some nutrition absorbtion issues, and temporarily pupt myself on raw prenatals (gluten free, no soy or milk)... but as you can tell by this rambling post, I'm basically casting around and trying to become well pretty much on my own.

I have not had any interest or inclination from my Internal Medicine doc, my allergist, nor my GI to consider Celiac's Disease... but I am concerned because I don't want to lose my gallbladder and I feel pretty much like dirt most of the time. I am presently only taking Singular, and stopped my shots so that I can take the ALCAL test. This is a pretty convoluted introduction, but any experiences or advice is welcome... I'm so glad to be here, I can't tell you what a relief it is to find people who sound alot like me. Before the RAST, my docs had me convinced I was a hypocondriac.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



jststric Contributor

Wow, you know so much more about yourself than I do! I am almost 52 and about 4 yrs ago suddenly had "issues" and after a couple of years narrowed down new intolerances to glutens, dairy, nuts, eggs, beans and rice. It didn't take too long for me to realize that doctors were of no use and only costing me money for no results. After my GP, went to an allergist and basic testing showed that NONE of the things I've mentioned showed as reactive. But a few that DID, have given me no problems. How does THAT happen?? Was sent on to a GI who did a blood test that turned out negative. That was fairly early in my process, so I have no idea exactly what that was testing for. I gave up right after that and relied on this forum and ALOT of online research. When things get too technical, I shut down, so my "knowledge" is self-diangosed and you know what? It works, lol. I hope you can find answers to all your needs here. Sounds like you could certainly use some help. The biggest thing that helped me was keep a journal of everything I put in my mouth and doing an elimination diet. Takes lots of time, but its effective. And since simply eliminating those things from your diet is the only thing we can do to help, you aren't wasting time. You sound like one that isn't only affected by ingesting, but simply touching. Maybe once you realize what you need to keep out of your diet, it'll help with finding the external equivalances to help with the skin issues. I would suggest supplements of probiotics and essentials like iron, calcium, Vit. D. I think most of us have absorption issues so we need the extra oomph. Best wishes!

The-Albatross Newbie

Thank you Jststric for your reply... I tried the elimination diet before... and got the histimine response (forehead and cheeks go cold, back of the head near the nape of my neck heats up about 30 minutes after eating and lasts about 30 minutes)from really odd ball stuff, and to be honest I got pretty confused with it... so I get the giant sized ALCAL panel in a couple of weeks (I went of my immunotherapy 6 weeks ago and near as I can figure I need to be off for about 8 weeks minimum so that I don't skew the tests). I don't get anaphalyxis, rashes, or asthma... just a giant sized histimine response... and from time to time the oral ulcers, throat issues... and a whole host of other stuff... so I'm hoping the direction for foods to eliminate, foods to take out and try to put back and list of food items that are okay for me to eat will give me some energy. The ENT who diagnosed me said, well the good news is you have a great immune system... the bad news is it's really busy and it's running all the time.

Immunotherapy did help me get some resistance to cold/flu (that I didn't have before)... but I'd get weird reactions even when I hit "maintenance dose"... so it's gotta be the food. As far as the gallbladder, no stones showed up on the ultrasound... so I've started my own science experiment and declined surgery til next October... if I show up bad twice, I'll consider the surgery... but in the meantime I'm doing A-F Betafood (organic beet tabs at each meal), and the plan is to detox the liver, kidneys and gallbladder as best as I can while trying to eliminate the foods the ALCAL recommends. With luck and a good tailwind, maybe I can avoid losing my gallbladder.

Anybody got any info on pancreatic enzymes or experiences to share??? Any and all help welcome, thank you so much.

The-Albatross Newbie

I'm trying to keep this up, to get feedback...

At present I'm taking 1 Singulair, Bone Up (for the osteopenia), Milk Thistle and Dandelion Root (liver and immune support), Vit D (my blood test over the past two years finally tested good at 8000 units a day), Vitamin Code Raw Prenatal (in a last ditch effort to address the mineral deficiency for my nails and give me some vitality), fiber (for the loose stools and in an effor to keep the nutrition in the intestine long enough to absorb), and the A-F Betafood organic beet to detox the gallbladder. I was using probiotics, but am thinking that pancreatic enzimes like Zymeactive might be a better fit.

Please share, I'm open to whatever you've got... I've been under employed for a decade, the allergies are not managed by either the immunotherapy or antihistimine. My histimine number is far too high... how can I bring it down????

Jestgar Rising Star

Celiac disease/gluten intolerance is an autoimmune issue, not an allergic issue. There may be individual people on the board who can relate their experience with allergies, but as a collective our knowledge is about food intolerances.

Maybe a board addressing food allergies would be more helpful to you.

The-Albatross Newbie

I hit a dead end on pursuing food allergy... when I entered the rhealm of GI problems and gallbladder complications. Perhaps, I'll just sit back and read along for a while... and wait for the testing, including the genetic test. I guess I was so releived to have found a likely culpret... I am not expressing myself as well as I could.

Thanks again...

GFinDC Veteran

I had hay fever since I was 16, pretty strong too. I was on anti-histamines most of the spring and fall, some in the winter and summer too. Now I am almost 53. I still have some anti-histamines in the kitchen cupboard, but I don't carry them around all the time like I used to. Going gluten free cleared up my hayfever and other allergies for probably 97% of the time. My teeth/gums are much better also, and I don't have constant sinus problems.

Food intolerances are a different immune reaction than food allergies though. So allergy testing won't find them. But my hayfever did subside by a great degree.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



The-Albatross Newbie

Thank you GFinDC for your reply.

rosetapper23 Explorer

Did you happen to read this interesting thread on auto-immune diseases? I think you might find it helpful. Also, you might consider taking L-Glutamine because it heals the gut and has helped many of us with gut issues. Here's the thread:

The-Albatross Newbie

Thank you for the link... there's a lot of info here, and I'm reading along. I'm sort of letting it all sink in, as well as I can since some of it's pretty technical. Appreciate it really.

Gutsy Girl Rookie

....I was using probiotics, but am thinking that pancreatic enzimes like Zymeactive might be a better fit.

Just wondering...can't you do both probiotics AND digestive enzymes? That's what I'm trying now. Probiotics help (when I take them every day), and I think the enzymes help a little too...but on both accounts I need to be more consistent. Probiotics and digestive enzymes have different functions, but work together nicely.

RollingAlong Explorer

I would suggest

Resarching the Paleo diet and occasionally taking a "holiday" from all the supplements. Introduce them back one at a time to be sure they agree with you.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      CT with contrast.

    2. - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      2

      Shingles - Could It Be Related to Gluten/ Celiac


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,398
    • Most Online (within 30 mins)
      7,748

    Megannnnn
    Newest Member
    Megannnnn
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • JoJo0611
      I didn’t know there were different types of CT. I’m not sure which I had. It just said CT scan with contrast. 
    • Scott Adams
    • Scott Adams
      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
    • Clear2me
      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.