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Desparate And Itching Again

skyyblues

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skyyblues Newbie
skyyblues
Posted

Hello - I am desparate and hoping to find answers.....

Symptoms: Dishydrotic Exzema - Mainly hands but also arms, legs, chest, and recently face.

Diarrhea - 10 - 15min after eating - sometimes stabbing pains

Arthritis in knee

Leg cramps

Throat closes - Occaisonally happens when swallowing (unknown trigger)

Steroids: Prednisone - Nov and Dec 08 / Apr 09

Kenalog - Shots 2x in Jan 09

Medications: Omeprazole 20mg 2x day - Indestion 3/09

Simvastin 40 mg 1 day - Cholestoral 3/09

Ranitidine 150mg 2x day - trying to reduce acid in body to help exzema

Fexofenadine 180mg 2x day - allergy symptoms exzema

Singular 10mg 1 day - allergy symptoms exzema

Hydroxyzine 10mg up to 3 at bedtime - for severe itching at night to sleep

Benadryl - itching

I had some allergies as a child. Exzema on back of thighs never diagnosed cleared up. 2 1/2 yrs ago while changing jobs had new carpet and linoleum installed at which time I started to break out on legs and hands, spreading to arms. Kept seeing dr's none of which had any clue. June 07 had allergy tests which showed cabbage, formaldehyde, and several other perservatives. Got allergy somewhat under control in 08 until I had a root canal in Sept. Started to break out again. Allergy doc put me on prednisone(hate it). Had severe breakout and staph infection on hand in Jan. At that time they did a biopsy of my hand and I just inquired and it was not DH. Had just finished prednisone so they shot me with kenalog twice within a week and a half. Hands got somewhat better. March thighs broke out, hands worse, arms and chest also broke out. Saw my GP for regular check up and when he saw me he asked if anyone ever tested for Celiac Sprue. I said no, so he ordered blood tests. I did research. Wow could this be it??? Blood tests came back negative, but told that can happen (would steroids affect test results?). Doc said go ahead and try gluten free. Stomach is better than it has ever been!! Yeah. Was out of town 1st week of gluten free and arms and legs started to fade and couldn't see new blisters on hands!! On Thurs nite eye itching. Friday still itching starts swelling.... Friday nite when lips started to numb went to ER. Prednisone and Benadryl again... I am weaning off prednisone as quickly as possible and doc has sent me for consult with Gastro doc to do enoscopy for biopsy. I know I will have to go back to eating "poison" for correct testing. Thought of running to bathroom with pain not pleasant but I am willing to do anything at this point.

I am sorry for such a long post but am feeling at my wits end. Doctors call me a freak, friends and family are somewhat supportive but think I am just going to get a shot and be fine. My hands are cycling horribly, my thighs are broke out a little and I just want to cry at my own private pity party..... :( ......Any suggestions or help would be greatly appreciated.

Becky - Racine, WI

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ang1e0251 Contributor
ang1e0251
Posted

You are Not a freak. You are sick. People, dr's included, are judgemental. Gluten can cause all the symptoms you described. It might not be your only problem but your dietary response is dramatic. It is affecting you.

Keep us posted. No one else might understand but we do.

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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