New Here: Having Difficulty With Diagnosis

[jennyofmany]

Hello all! My name is Jenny and I've been struggling with possible (not sure yet) wheat sensitivity issues and have been having trouble with trying to get a proper diagnosis. Looking back, I had a lot of problems with my stomach/bowel, appetite and with eating as a child to young adult as well as depression and anxiety for many years along with carbohydrate cravings (bread, candy, crackers, chips etc) and a host of other symptoms. I've seen doctors, GI specialists etc, but no one could help me. I was finally prescribed a tricyclic antidepressant which brought back my hunger and helped immediately upon taking a very low dose. I've been on this low dose of medication for over 12 years. Recently, I decided I would start stepping down my doses (with my doctor's permission) due to the fact that I've been feeling so good for many years now. I did go through some withdrawal symptoms with the dose reduction, but when those faded, I started to have breathing problems, as well as increasing digestive issues, irritability and severe hypoglycemia. So I thought I would see an allergist. She tested me for Celiac, but the test was negative. I also did not respond to the skin testing. I've been reluctant to do anything about this because of the fact that I may just be going through withdrawal. But what gets me now and what is causing me to think more about looking at possible food sensitivity is the fact that my tricyclic medication is also a powerful antihistamine used in smaller doses for people with IBS and certain allergies. I've also been on such a low dose that withdrawal is not very common place and it took over 4 months for these food sensitivities to get to a point where it was a concern (well past the markers for withdrawal). I was just wondering if I should be looking at a possible allergy here? Or does Celiac respond to antihistamines? I am also doubting the skin test could be accurate due to the tricyclic antidepressant (which has been known to throw off allergy tests). So my questions are: 1.) Does Celiac respond to antihistamine or is it just wheat allergy? 2.) And could the tricyclic have thrown off the celiac blood test?

I'm thinking no to both questions and that I could be dealing with a mild wheat allergy, not celiac. Just wanted to ask the questions.

[jayhawkmom]

I am not nearly as knowledgeable as most of the folks here... but, I do know that antihistamines aren't going to make any difference in Celiac. Celiac is an autoimmune disorder, not an allergy. The antibodies created by Celiac are not IgE mediated antibodies - as the case with food allergies, so I don't think it would have any affect on the Celiac panel.

I know someone will correct me if I'm wrong.

[AliB]

Hi Jenny.

Please don't fall into the trap of assuming that just because your tests are negative, you are not Gluten intolerant.

Everyone is gluten intolerant. It has been genetically modified into a very complex protein that we cannot process properly. It damages the gut and stops us being able to absorb essential vitamins and minerals.

The best thing you can do to help your body is to drop gluten like a hot brick! Many find they are also reactive to Dairy and other foods, so it is worth dropping that too if gluten alone does not seem to be the only solution.

I have been gluten and dairy free for 2 weeks and have also restricted both Carbs and sugars. Within 5 hours I was starting to feel the benefit and am continuing to improve. I am also monitoring and picking up other odd things my body doesn't like, like soya. I don't know if I am Celiac or not, I will not know the result of the blood test until Monday, but to be quite honest, I don't really care! As far as I am concerned, dropping gluten has been more than enough proof for me and I really don't relish the thought of having to go through the medieval torture and agony of consuming gluten for several weeks just so they can stick a pole down my throat. No thanks.

Don't just drop wheat, make sure you go gluten-free as wheat can masquerade in all sorts of guises, and those who are gluten intolerant cannot usually tolerate rye or barley either, so no beer I am afraid! Oats are usually tolerated ok, but you will just have to monitor that one.

I hope you work it out ok.

[jennyofmany]

Thanks for the replies! I've been doing a bit of studying and experimenting. This weekend, I went on a partial fast with only foods that I knew were gluten free, then after eating rice krispies last night and this morning (I overlooked the malt in it), I've now got a splitting headache and bowel trouble. Wow, what a difference a few days makes! I'm going to the grocery store and getting a better cereal with the quickness! I have also been researching Doxepin (my med that I've been weening off of) and Doxepin has distinct anticholinergic actions as well as antihistamine. So I may not be getting the benefit of antihistamine, but instead benefiting from the anti nausea and IBS symptom control that anticholinergics have. Though, my blood test was negative, I am still going to cut gluten out of my diet. This weekend felt great! I had more energy, alertness, memory etc. And now that I've been eating cereal with malt in it, I'm feeling cranky, sick and out of it. I don't want to go back to that just because a doctor couldn't see the problem in their microscope. It took only two days for me to prove that this could very well still be the issue. I think that doctors have a ways to go in their research of allergies and food sensitivities. Even my allergist was wise enough to tell me not to rule out celiac completely after the test results came back. She recommended a GI specialist and to try avoiding gluten to see how I feel. Well, I felt great so I'm going with it!

Hi Jenny.

Please don't fall into the trap of assuming that just because your tests are negative, you are not Gluten intolerant.

Everyone is gluten intolerant. It has been genetically modified into a very complex protein that we cannot process properly. It damages the gut and stops us being able to absorb essential vitamins and minerals.

The best thing you can do to help your body is to drop gluten like a hot brick! Many find they are also reactive to Dairy and other foods, so it is worth dropping that too if gluten alone does not seem to be the only solution.

I have been gluten and dairy free for 2 weeks and have also restricted both Carbs and sugars. Within 5 hours I was starting to feel the benefit and am continuing to improve. I am also monitoring and picking up other odd things my body doesn't like, like soya. I don't know if I am Celiac or not, I will not know the result of the blood test until Monday, but to be quite honest, I don't really care! As far as I am concerned, dropping gluten has been more than enough proof for me and I really don't relish the thought of having to go through the medieval torture and agony of consuming gluten for several weeks just so they can stick a pole down my throat. No thanks.

Don't just drop wheat, make sure you go gluten-free as wheat can masquerade in all sorts of guises, and those who are gluten intolerant cannot usually tolerate rye or barley either, so no beer I am afraid! Oats are usually tolerated ok, but you will just have to monitor that one.

I hope you work it out ok.

[moldlady]

AliB,

Tell me more! You said that everyone is celiac? How have they changed the protein in wheat to cause this?

Jenny,

I just posted on the dry eye thread everything that you need to hear too.... I'll cut and paste it here if I can...

The underlying causes of this can be many things. It can be heavy metals from lots of shots and foods that contain them not to mention mercury from fillings, paint, or broken light bulbs, etc. The heavey metals can depress the immune system to the point of not being able to fight off diseases such as caused by bad bacteria and fungus. Antibiotics will kill off the bad bacteria but then the fungus goes unchecked and takes over the whole body. I believe that many that do not have a genetic propensity to celiac can acquire it by having heavy metals and /or fungus in the intestines. Either way, one has trouble keeping the intestines healthy for best absorption of nutrients for the body to be well.

I would suggest a lifestyle of no gluten, no sugars or white rice or potato starch, limited high sugar fruits (grapes, apples, bananas, etc.), and this will not only starve the fungus/yeast but it will also help heal the intestines. Pump your body with good probiotics to replace the ones that were killed off by antibiotics. Natren.com has a wide assortment of human strains to choose from. I recommend HT for the intestinal problems. For the heavy metals? I suggest making your own green drinks for detoxing. Detox. baths or saunas... I've posted the formulas on this forum elsewhere. AC also helps for Herz. reactions and die off. You will actually get a bit worse before you get better because when the yeast dies off it releases mycotoxins into the system. Also for the heavy metals... go slow.... used coriander in recipes ( a taste kinda like cinn. but not exactly), a sprinkle of dried cilantro on salads and things or in your salsas.

If you get to detoxing too fast: activated charcoal absorbs mycotoxins and detox baths help pull them out and also the heavy metals too. Exercise and sweating helps tremendously if you can do this.

Whew... that's enough for now... if you have specific questions JLMK.

ML

[RiceGuy]

Good for you jennyofmany!! I'm so glad to know that you are on the right path. That is, taking decisive steps to get to the root of the issue. I'm confident you've already found the answer too!

[nora-n]

Hi, I just want to add that GI specialists only look for the villi blunting or villi atrophy kind of celiac (I think it is because here in europe patients get money from the health departments in some countries and they need a positive biopsy. Without positive biopsy, no celiac and the same rules re.celiac diagnosis apply to you.) You might be super-sensitive to gluten and without blood tests or positive biopsy it is hard to get a diagnosis.

I always had negative allergy tests, even though I am allergic to hazelnut an birch tree pollen....

nora