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Downhill Spiral


JennFog

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JennFog Rookie

Ok let me start by saying this will be a vent session!!! But please help...

Diag'd w/ Celiac Feb 06, accepted this in August 06 and thus my totally gluten free diet began. My vitamin levels are getting better, great right... BUT NOW my immune system is all over the place, I am breaking out in hives, my face swells and there is a choking cough which leaves me to gasping for air, so in a mad dash I grab my inhalor. After this 30 - 40 minute attack, I am physically exhausted, I have even passed out on the kitchen floor.

So my doctor thinks I have allergies to other grains. "YOU HAVE GOT TO BE KIDDING ME". He wants to take away corn, rice and potato. Now what is a girl to do. I love my meats fruits and vegetables, but come on, I needs some junk food every now & then or a baked potato, I just found these rice thai noodles "my saving grace away from pasta".

If he even mentions the words "no dairy" we are gonna fight.

Tomorrow I go for an allergy test to find out more. But I have a bad feeling my doctor is right. This weekend I cut out the above items and I felt much better, my allergy symptoms really lifted. I still hope maybe it is just one, like the potato - I could live without that. But corn and rice that will be hard.

Now I hear about these people on the paleo diet, so I read a little about it... No salt, no sugar, no beans, no soy, no wheat, no corn, no potato, no rice... this list goes on. Anyone following this diet??? & How???

Is anyone else, allergic to all grains??? How do you deal with it???


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marciab Enthusiast

I am not allergic to all grains, but I had to answer anyway. It is entirely possible that you will be able to re-introduce rice, potatoes, etc at a later date and just need to take emergency precautions at this time.

I was down to about 5 foods when I started this, but now there are plenty of foods I can eat.

BTW, your taste buds will change once you have been away from those grains and you won't even be interested anymore. :)

Marcia

chrissy Collaborator

i'm thinking the same thing as marcia----you may eventually be able to add some of these things back.

CarlaB Enthusiast

Right now I eat only meat, chicken, fish, eggs, veggies, and a little potatoes and rice. I can have no more than one piece of fruit per day. I have no sugar, caffeine, alcohol, dairy, gluten, corn, or soy. I eat 5 small meals per day.

I am seeing an MD who also practices alternative care and she said I was just so run down from stress and constant inflammation that I need more than just a gluten-free diet to start feeling better. Eventually I'll let myself have treats, but probably only once or twice a week ... I don't want to feel bad again ... I'm only now starting to feel better and have a long way to go.

So, though I'm not on the diet you mentioned, mine is as resticted ... how do I deal with it? I eat at home, I prepare all my own meals, I'll eat before we go somewhere and bring food with me. I spend so much time eating, shopping for my food, etc. that I don't really have time to think about all the foods I'm missing out on. Plus, the stuff I'm treating myself to is so tasty, how can I complain? I'm just doing what I have to do to get better.

I'm glad you're starting to feel better. You're not alone, there are others of us who have had to make things more simple in the beginning.

jerseyangel Proficient

Hi--A lot depends on whether you are truly *allergic* to these foods, or intolerant.

The first step is to see the allergist and have the allergy testing--that's what I did and I was not allergic to any of the foods he tested for. Your reactions sound like they could be from a true allergy, so I'm glad you're getting tested for those.

If you are negative, but find the foods still bother you, you are probably intolerant. You'll need to avoid the offending foods for at least 6 months or even longer. At that point, you could (if you want) try the food again and see how it goes. It's possible for a food *intolerance* to go away with time, as as your intestine heals.

Through an elimination diet (as suggested by my allergist), I found that I'm intolerant to dairy, all legumes (soy, peanuts, beans, peas, green/wax beans, etc.), corn, and coconut--pretty much all forms of plant protein. My diet consists of meats, veggies, fresh fruits, potatoes, olive oil, almonds, spring water and a small amount of dark chocolate.

kabowman Explorer

It does get better. I avoid most of that and they are right, your taste buds change and you don't miss those foods the longer you avoid them. I occasionally treat myself like Carla and wow, do I really enjoy that but most of the time, I am fine.

I eat out occasionally but at very select places that are used to dealing with me. Most of the time, 99.5%, I cook and eat at home.

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    • Scott Adams
      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
    • trents
      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
    • suek54
      Hi Kayla Huge sympathies. I was diagnosed in December, after 8 months of the most awful rash, literally top to toe. Mine is a work in progress. Im on just 50mg dapsone at the moment but probably need an increased dose to properly put the lid on it. As you have been now glutened, I wondered whether it might be worth asking for a skin biopsy to finally get a proper diagnosis? Sue  
    • MicG
      I had been eating reduced gluten until about 3 days before the test. I did realize that wasn’t ideal, but it was experimental to see if gluten was actually bothering me. One slip up with soy sauce and it was quite clear to me that it was, lol. 
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      Possibly. Your total IGA (Immunoglobulin A, Qn, Serum) is actually high so you are not IGA deficient. In the absence of IGA deficiency, the most reliable celiac antibody test would be the t-Transglutaminase (tTG) IgA for which your score is within normal range. There are other things besides celiac disease that might cause an elevated DGP-IGA (Deamidated Gliadin Abs, lgA) for which you do have a positive score. It might also be of concern that your total IGA is elevated as that can indicate some other health problems, some of which are serious.  Had you been practicing a gluten free or a reduced gluten free diet prior to the blood draw? Talk to your physician about these things. I would also seek an endoscopy/biopsy of the small bowel to check for damage to the villous lining, which is the gold standard diagnostic test for celiac disease.
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