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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,601
    • Most Online (within 30 mins)
      7,748

    rita jean
    Newest Member
    rita jean
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
    • trents
      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
    • cristiana
      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
×
×
  • 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.