Avatar universal

Inexplicable Swelling and Hives

I have been suffering from progressively worsening swelling in my lips, hands, and feet and hives in my midsection, legs, and occasionally arms. I have been to three different urgent cares, two allergists, a dermatologist, and two general practice doctors, and I always get the same answer: They don't know what it is or what is causing it, but they do know it is some sort of autoimmune disorder. I've had blood and skin tests done for allergies, but they have all come back perfectly normal -- no allergies. I am on Zyrtec and Zantac right now, but my body is becoming accustomed to it and the swelling and hives are worsening. It is a very irritating and unpredictable problem and I feel that I need a doctor who will take the time to investigate this.
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1530171 tn?1448129593
Annie welcome to the forum.

I'm sorry about your undiagnosed condition and the suffering it's causing you.

First let me explain that the Autoimmune Disorders Community is a regular members forum and not  an Experts (Doctors and Medical Professionals.)

A few suggestions.

1. You may want to do Dr. Coca's Pulse Test. It's a free download and it takes a week to complete . This test will indicate any reaction whatsoever for anything ingested during this time, including hidden or delayed allergies,
sensitivity or intolerance.
You must document and record everything as instructed in detail.
If you are not able to interpret the results according to Dr. Coca's instructions, you may ask someone to help you or you may post them here.

2. As an alternative you can do an elimination diet starting with gluten/wheat/grain group, which will take a long time of course.

3. The most offensive groups are the gluten/wheat/grain and the dairy group,which are the most common in Autoimmunity.
Related tests are  TGF beta 1  CD4+CD25+.( elevated TGF beta 1 with low CD4+CD25+ cells drives production of antibodies to gliadin and cardiolipin),

Look also into Gliadin test (urine), by Cyrex labs. They test 12 forms-not just the alpha ordered by most doctors- of gliadins regarding gluten intolerance (not necessarily digestive).
Now they can also test which part of the body is affected.

Also by Cyrex Labs : Cyrex Labs Array 4: Gluten Associated Cross-Reactive Foods.

4. Genetic testing. This has to do with methylation processes-a bit too technical to get into right now, but basically the result is that when you have
a mutatation of the MTHFR gene, the corresponding MTHFR enzyme  works at a much lower rate and one of the many issues that result from this, pertinent to you, is that histamine produced in your body does not get
broken down.
And this is just of many consequences and if left untreated, serious diseases like MS and cancer can develop.

MTHFR Gene  testing. One of the least expensive places for this is
23andMe, which will send you back "raw data" which needs interpretation.
No problem. If you decide for that , let me know and I can give you a couple links where you can upload the data and get the answers for free .

The good news is that the treatment is rather simple.
Should you have one of this gene 40-50 mutations (it is actually quite common), please let us know.

I don't want to overwhelm you at this time, however, there more tests and
other things to look into, so I would recommend that you keep in touch with us and keep us updated and if needed we can make additional suggestions.

I hope this helps, however, my comments are not intended to replace medical advice.

Best wishes.
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Avatar universal

Thank you for your input. I will definitely look into all the possibilities you have listed above.

One thing that I failed to mention is that I also have seen a Maximized Living doctor who introduced me to the organization's nutritional plans. He recommended the Advanced Plan to heal my body instead of cover up the symptoms with medication. This plan cut out absolutely all added sugars (including agave, honey, and any form of sugar), dairy and wheat (aside from sprouted wheat). I was eating only organic meats, vegetables, and berries. That cuts out any possibility of this issue being a gluten or dairy intolerance. I did continue taking the medication during this change because the hives were unbearable if not suppressed; however, the diet had a considerable effect on my symptoms. I had been taking the same dosage of Zyrtec and Zantac before and during my nutrition plan, but the difference between the severity of the hives before and during were pretty impressive. Since then, I have re-introduced honey, unbleached whole grains, and organic dairy back into my diet with no problems.

Another important tidbit is that I am a 20-year-old female. One of the allergists I saw told me that she has seen dozens of cases like mine in older teenagers/young twenties patients, and she even claimed that she herself had my exact condition when she was my age. Yet she never told me what it was. She didn't know.

Anyway, thanks again for all the information. I hope it leads me to some answers.

Helpful - 0
1530171 tn?1448129593
Hi Annie.

For those who are truly gluten sensitive, any amounts of foods containing gluten, including sprouted wheat flour may still create a problem.
I'm not saying you are sensitive to gluten, but in the event you are, sprouted wheat is not gluten-free.

The nutritional plan sounds very reasonable, however, even the healthiest of choices could be sometimes treated as "offensive" by our immune systems even in the tiniest amounts.

Dr. Coca's Pulse Test would rule gluten sensitivity out within a week.
Not an established diagnostic test, but nonetheless fairly effective and accurate to my opinion.

Oh, one more thing I forgot to mention is NAET ( Dr.Nambudripad's Allergy Elimination Techniques).
Please consider looking into this. There are Doctor's and Practitioner's
all over the world trained in NAET, with excellent results.

I have trained in something similar to this, again, with great results, called "Allergy Antidotes".  

You're so young and you deserve to have a healthy and happy life.

I truly wish the best possible outcome for you.
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