Gluten Allergy

[dadoffiveboys]

My wife has posted on this forum before but I am new myself - being highly allergic to gluten. I wanted to share some of my information on the various observed effects on myself and my family from Gluten - even more so because all of us tested negative on conventional tests for Celiac Disease. Confirmed reactions are my Father, myself and all four of my sons (a fifth boy is 'on the way' but I am going to take a guess he will be allergic to gluten too!). The medical community cannot believe all of the effects are attributed to Gluten but after you read this post I will let you determine this for yourself. I am curious what the probability of having nearly 100% gluten intolerance or allergy is in an entire family. I do believe I must have a double set of some gluten intolerance gene and hence I am genetically passing this to ALL of my children It is also of concern because each one of us has DIFFERENT symptoms, all blood and biopsy negative, but the relief is the same - DO NOT EAT GLUTEN! I am very thankful we do not seem to have any other food allergy - I feel for those who have so many!

It started with my son going to a pediatric gastroenterologist for symptoms of failure to thrive, GERD and chronic constipation. He was given a TTG test which came back at a 20 (0-20 considered within the normal range). Because it was 'near the max of normal' and his lack of eating the GI doc did an endoscopy and several biopsy's - all of which were 'negative' and perfectly normal. However, by the time we got the appointment my son had not had any gluten for two months since he was subsisting on a completely liquid diet - gluten-free pediatric drinks. At that time he dismissed Celiac disease (which I think was 'correct' now by it's definition - see more later) but I proceeded to put him on a gluten-free diet.

My wife and I both underwent testing - my wife's results completely normal but my results were normal except ONE test - IgA Anti-gliadin was equivocal. Hmm.. I thought this strange so I was referred to a gastroenterologist and continued to eat plenty of wheat/gluten until my endoscopy. My results were as follows: TTG of 7 (0-7 being normal) - my GI doc had me take a TTG test since it wasn't done the first time. I had about 20 biopsy's - 10 in the intestines, 6 of the stomach and 4 of the esophagus. All of the biopsies of the intestines were normal, the stomach showed signs of gastritis and the esophagus showed signs of reflux damage but no signs of eosinophils or lymphocytes. I was given a presciption for Nexium but I told my GI about my gluten theory.. my son above was already showing improvements on a gluten-free diet and discussed my IgA results and he agreed if I didn't show signs of reflux I should try a diet before medication - WHERE ARE MORE OF THESE DOCTORS!!!

Anyhow we decide in March of 2007 (it's now August) to go 100% gluten-free - EVERYONE! This is when the 'surprises' happen... which is.. ALL of us are off ALL medications (except Allegra for IgE allergies)- even for other symptoms!!!! I want to detail this to help show what kinds of effects Gluten can have on each.

Oldest son - chronic rash on his buttocks, constant nosebleeds, attention deficit/hyperactivity (not diagnosed), vocal tick? Had reflux as an infant but never diagnosed, asthma when sick.

Second oldest son - chronic asthma - was put into the emergency room when an infant and had reflux, on constant medication for Ashtma.

Third oldest - the one tested above - failure to thrive, chronic constipation, reflux, lethargy, asthma when sick.

Fourth oldest - only 1 year old at the time - the START of chronic constipation and reflux.. we were NOT going to let him go through this - he went gluten-free too!

Myself - fatigue, GERD, neuropathy (very mild), periodic migraines, mild ADHD, chronic idiopathic uticaria, allergic rhinitus, asthma when sick and allergic.

Father - fatigue, GERD for 30 years under control with Prilosec, diagnosed neuropathy, sleeping disorder, stomach damage from excessive acid, swelling of the feet/ankles, kidney failure (40% kidney function), high blood pressure under control with 6 different medications.

Now it is August.. the following have been removed:

Oldest son (7)- rash has subsided.. I believe he MAY have a form of DH due to the recurrent nature of it but either way he's gluten-free. Nosebleeds went from 7-10 per week to 1-2 per MONTH and still decreasing. Found out he also has allergic rhinitus and that isn't going away but is treated seasonally with Allegra. ADHD has improved dramatically with gluten-free diet. We believe he also has Tourette's Syndrome and are going to have him tested. These conditions are 'comorbid' with Autoimmune disorders so I wouldn't be surprised.

Second oldest - Asthma is completely gone and any reflux. He actually has a higher lung test function gluten-free than he had with gluten and his allergy medicine.

Third oldest - has gained 4 lbs since March.. still not eating great (but he IS EATING vs. liquid diet only) but constipation is gone, reflux is gone and lethargy is gone.

Fourth oldest - reflux and constipation is gone.

Father - this is where the biggest change happened.. as I pestered him to go gluten-free. His neuropathy is gone, swelling of the ankles is gone, blood pressure - he is off all 6 medicines - doctors cannot believe it was caused by gluten. Reflux - he is OFF MEDICINE for the first time in THIRTY YEARS!!!! Unfortunately I do believe the Kidney damage and stomach valve damage are probably permanent and due to years and years of misdiagnose and covering up his symptoms with medicine. I wanted to show this as an example of what can and DOES happen .. Enough incentive for me to NEVER EVER eat gluten again!

Finally myself - reflux is gone, asthma is gone, neuropathy is subsiding.. my chronic idiopathic uticaria is not chronic nor idiopathic - it is a direct reaction to GLUTEN. Strange it's not DH as I saw a determatologist for it.. but nevertheless - if I eat gluten within 1 day I have a breakout. Actually going 'off gluten' I find I am very sensitive. I am also Catholic and have gone as far as trying the 'low gluten' hosts (0.01% gluten) which Dr. Fasano believes could be safe for some.. I had a reaction within 2 days to it.... I guess I am VERY sensitive - moreso than I ever thought until I went completely gluten-free. My allergic rhinitus actually got worse - probably because I have less IgA antibodies circulating and more room for the IgE's.....

I also believe from our results we have a reaction to gluten in the STOMACH and not the intestines and hence our results will normally be negative to conventional testing. The fact I had signs of Gastritis and Reflux in my endoscopy.. but not so severe.. show this is highly likely. Also, gliadin can permeate (I think) the gut wall and cause the IgA antibodies which I had present in my bloodstream. Obviously these effects are SLOW to take effect.. but they are also slow to alleviate. My GI agreed that is possible and there is no 'test' which would be able to show this. Folic Acid, Iron and Vitamin B6 are absorbed primarily in the stomach (I think) and effect neurological function, control bleeding, etc. I can see a direct parallel between this and the related problems. Reflux can cause Asthma and was probably the cause of our Asthma. The Pediatric GI said we have a Gluten Allergy - vs. Gluten intolerance with the description that our allergy was due to the protein fraction of wheat (i.e. gluten) and that the protein allergies are controlled by the IgA system and NOT the IgE. Since it wasn't in the intestine we would be 'negative' on TTG and other testing methods. It is slightly different from the celiac disorder (since by definition it is an effect of the intestines) but looking at my father - ok the damage is in different places but seems pretty darn severe to me!! My GI doc told me you can be allergic to a food allergy in any of FOUR locations - Esophagus, Stomach, Intestines AND/OR colon. Some people have much worse reactions and combinations of these. Sometimes the Esophagus reactions show up as IgE mediated vs. IgA - hence food anaphalaxysis. I am not an expert on this but I can see a whole area of Gluten allergies/intolerances and we don't fully understand the effects.

Any comments feel free.. I just wanted to share some of the 'results' and 'symptoms' myself, my father and my children had to Gluten.

[Nic]

Hi, I am glad your family is doing so much better. It is shocking how many different symptoms are caused by food allergies/intolerances. My oldest son is a diagnosed Celiac and is also dairy intolerant. His primary symtoms were constipation (chronic and severe). Gluten free helped but dairy free really fixed him it seems. My youngest son, according the Enterolab, does not carry the Celiac gene but does carry the gluten intolerance genes (2 of them). He has never had a normal poop in his life, always too hard. He also has cold induced asthma which at times can be very bad. I am wondering if he should be gluten free too.

Nicole

[Lisa]

Welcome!

Wow, you are truly a testament to diligence and perseverance. Your results for yourself as well as for your boys is so overwhelming to the dangers that gluten can rage.

I am so glad that all of you are well on the road to recovery.

[Juliebove]

My daughter is allergic to wheat, gluten, soy, peanuts, eggs, dairy and bananas. We didn't find this out until she was 6.

As a baby, she would not gain enough weight. Never quite small enough to be considered "failure to thrive", but close to it. She seemed to do a little better when I began to introduce solid foods, although she was constantly hungry and would simply grab foods from people's plates.

I had tried breast feeding her but wasn't producing enough milk so I had to supplement with formula. As you can see, based on her food allergies, there was no one formula that would work. She had constant stomach problems. If she wasn't throwing it back, up, it was coming out quickly or her stools would be so hard there would be bleeding.

I put her on cow's milk on her first birthday. That seemed to help some. Why? I don't know.

Prior to age 1, the only problems she had were digestion ones and what we were told was dry skin caused by too frequent bathing. I was told to bathe her only once a week.

Then the respiratory stuff began. Chronic ear, nose and eye infections. Nose bleeds all the time. Weird rashes. The Drs. kept telling me it was allergy related, yet they always told me she didn't have food allergies. How they thought they knew this I will never know. She went to two allergists and neither of them tested her for foods.

She started school. Did well at first but things rapidly went downhill. Teachers were convinced she had ADHD and she wound up in special ed.

By the end of first grade, the food allergies were diagnosed and her health really improved. She has had only a few ear and sinus infections since then. Nosebleeds off and on but we've usually tracked them back to her eating something she was allergic to. I'd been buying cashews that were roasted in peanut oil. Didn't realize. Then it was the cereal bars that were gluten free but they changed from canola oil to canola/and/or/soybean oil and now it's just soybean oil. I had to learn the hard way to check every package, every single time. And not to rely on the information given on websites where I might order. Must still check the package.

School was hard for her what with being placed in special ed and all. Instead of putting her in totally separate classes like they did in my day, they pulled her out of class at various times to attend special classes. So she was missing what the other kids were doing, yet expected to keep up with that as well as her special classes. She struggled for a while but it was obvious to me that her brain fog was clearing and she was better able to pay attention.

Now she is going into the fourth grade and will no longer be in special ed! We are looking forward to this upcoming school year.

[Joni63]

It is slightly different from the celiac disorder (since by definition it is an effect of the intestines) but looking at my father - ok the damage is in different places but seems pretty darn severe to me!! My GI doc told me you can be allergic to a food allergy in any of FOUR locations - Esophagus, Stomach, Intestines AND/OR colon. Some people have much worse reactions and combinations of these. Sometimes the Esophagus reactions show up as IgE mediated vs. IgA - hence food anaphalaxysis. I am not an expert on this but I can see a whole area of Gluten allergies/intolerances and we don't fully understand the effects.

Any comments feel free.. I just wanted to share some of the 'results' and 'symptoms' myself, my father and my children had to Gluten.

I have to say this is all very interesting. It gives so much insight about different reactions people have to gluten. The most fascinating part is the fact that the medicines in your family are almost completely eliminated and the wide varitey of symptoms improved so greatly, in only 5 months gluten free.

Thank you for your post. This is invaluable information!

[dadoffiveboys]

I have to say this is all very interesting. It gives so much insight about different reactions people have to gluten. The most fascinating part is the fact that the medicines in your family are almost completely eliminated and the wide varitey of symptoms improved so greatly, in only 5 months gluten free.

Thank you for your post. This is invaluable information!

I wanted to followup with some information on the medications we have removed. We would have severe problems with getting sick - especially cold/flu.. it seems some viruses mimmick the gluten proteins and were causing major reactions (and severe asthma breathing problems). We were using Pulmicort twice a day plus Xopenix (sp?) every 3-4 hours to keep them from wheezing constantly with Ranit (sp?) which is a generic form of prilosec I think and also Omeprizol (sp?) as an acid blocker for the reflux. I don't know if you guys/gals have seen the PRICES on these medicines.. but it was definitely cheaper to buy the gluten free foods than be taking all of these things round the clock. Then of course they wanted to put me on Nexium and my father was on Prilosec. I was also on Advair and had a bronchiodialator.. ie WAY TOO MUCH MEDICINE!!!

We now have a pile of medicine and haven't used a DROP or had any reactions since removing Gluten.. Amazing I think. What's sad is that we can't donate the medicine to anyone and have to throw it out Originally when we first got the pulmicort a few years ago (and it was brand new) the medicine was (w/o insurance) $1200 for a 3 month supply - I only paid $30 though - go mailorder pharmacy through insurance!

[gfpaperdoll]

Dadoffiveboys, your family sounds exactly like my family of grandchildren, two of which I know are double DQ1, plus me & my son & others. I am also double DQ1. If you want to know which genes you have, go to Enterolab.com & get the test. I really wish you would & post which genes you have. Those of us that do not have DQ2 or DQ8 are trying to get the word out about the other genes. So many people are needlessly suffering (& adding to the drug company coffers) & are being missed dx'd by their doctors.

We have had all the asthma, constipation, failure to thrive, ear infections, sinus infections, rashes, hives, tonsils out, bladder infections, depression, energy issues, personality issues, my 37YO son has liver damage, on & on & on & on.

For the one son that is not totally well, you might try eliminating dairy & or Soy. You could also test him for those things thru Enterolab.com (a lot cheaper than prescriptions, which I wish other people could figure out).

You might want to google Hemochromatosis, which is too much iron in the blood. I had nose bleeds as a child & my father's brother died of Hemochromatosis. If you have Irish English in the family especially get checked for it, as it comes from the Celtics, if I am remembering correctly, anyway if it is in your family they can pinpoint where your ancestors came from!!! It seems that a lot of the people that have it also are celiac...

[dadoffiveboys]

I wanted to provide an update because I think someone may benefit from this. I mentioned my father was having high blood pressure and kidney failure. My father has had more recent bloodwork and besides feeling MUCH better on the Gluten Free diet he is also having a REVERSAL of his kidney failure. His Kidney function improved (in about 6 months on the diet now) by 20%! He's till not 'out of the woods' and I'm not sure how much damage was permanent.. but it's definitely better to be at 60% Kidney function than 40%!! His doctors don't know what to make of this.. he was diagnosed with Focal Segmental Glomerial Sclorosis (FSGS) via Kidney Biopsy but the doctors said there was never any documentation of how this could show a reversal of the symptoms by going gluten free and/or FSGS be CAUSED by a gluten allergy - of course nothing would surprise this me on the effects of gluten!

On another sadder note.. I've found I myself cannot tolerate Lactose either. It was giving me back and stomache pains to eat it. I found I can tolerate butter and cheese (low lactose content) but definitely NOT ice cream or milk I can tolerate dark chocolates as well (preferrably higher Cacao %) and some milk chocolates.. but I think it's directly related to the amount of lactose I intake. Good thing I like Vanilla Soy Milk - since it's the only Milk I can drink now. I can still tolerate ONE yogurt / day if I'm careful. Any advice on cutting this out too? I don't think it's a casein allergy but I would like any advice - if I cut out all dairy it doesn't seem to be any different than just cutting out the lactose. I also get really bad gas if I eat any lactose.

[Nathan's mom]

Julie,

I'm just curious. Do you mean your daughter is intolerant of those things or allergic? Did you figure out all those foods yourself or did you have any kind of testing done?

I'm so glad she is doing well. It seems like when things mess with the body, for some it affects their nervous system/brain and it takes a long time to improve. I was hoping my son's mood swings/behavior would improve after he was off gluten but that piece of the puzzle is not solved yet.

Thanks,

Debbie

[gfpaperdoll]

Dadoffiveboys, Thanks for the update. I am so happy for your dad!!! hard to change our habits when we are older - so I give him a lot of credit for going gluten free.

I think you should go completely dairy free. & yes, those of us that are dairy free find that we can tolerate butter.

I was gluten lite for 10 years before I went gluten free, thinking I just had a wheat allergy. I have been gluten free for 3 1/2 years now & now also dairy free, well I was dairy free for the 1st year & then kept trying to add it back in - I have now given up & am so much healthier.

After a couple of trials of not taking my blood pressure meds & going to the doc to get my blood pressure checked - & they rave how perfect it is - I am off blood pressure med !!!!!! Even I that am convinced that gluten is the equal to rat poison am just amazed at this latest developement.

I will say that I am also grain free. I gave up rice a month or so ago & eat corn tortillas only about every other week, for a treat. I am eating more Paleo. I switched from peanut butter (a legume) to almond butter & I also do not eat potatoes (a nightshade veggie) & I do not eat legumes (which are a high lectin food & can contribute to a leaky gut). I added in more meat, which is probably the amount most people eat. These few adjustments to my diet made a huge difference.

also, my friends & co-workers are noticing how much happier I am...

one thing though, I strongly suggest you take a B12 every day & give it to your sons. I have recently upped my dosage & am going to up it again... & I will take it for the rest of my life.

[denisestevens]

Hi Dave, amazing story that you shared. Like your father, I was diagnosed with Focal Segmental Glomeruloschlerosis, a progressive kidney disease with depressing success rates of remission, even with treatment. Fortunately found this information on this forum prior to starting Prednisone. I immediately went gluten-free when I saw that people with kidney disease went into remission on a gluten-free diet. Guess what? I immediately started improving, and within three months I was in full spontaneous remission. My nephrologist is amazed at my turnaround and took me off the ACE inhibitor, cholesterol medication and diuretic. I'm in full remission and medication-free. The only thing I do is stick to a strict gluten-free diet. I will go so far to say that it saved my life.

[amberlynn]

I love your story! So glad you figured out the cause of your family's problem. I just discovered in October that both I and my 4 year old son have a gluten allergy. I'm 75% sure my Mom also has a problem, and relatively sure my Dad has a problem as well. My symptoms were so vague, and seemingly unconnected. Severe nausea, joint and muscle pain, allergy fog (I'd had it so long, I honestly thought it was NORMAL), I had pain in my hip that was so bad I almost had surgery on my back b/c of it (it was a debilitating pain that would make it nearly impossible to run, walk, climb stairs, carry my 2 year old!!), severe fatigue, constant hunger... I'm sure the long I'm gluten free, the more I'm going to notice. I am not diagnosed with Celiac, though my doctor refused the test and simply recommended I try the diet. It worked, and now I cannot see going back on the painful food to get an accurate test done.

I really wish my Dad would try this. He's a diabetic (diagnosed at 7), has had kidney disease for years (has had 3 transplants actually), numerous other health problems that I can't even list cause it would just take too long! He takes a ridiculous amount of medication everyday.

My Mom is planning on going gluten free, and I really hope she tries it. She suffers from depression, insomnia, and lots of other stuff.

Congrats on finding your 'cure'!! I know how good it feels to not feel like crud anymore