Su's story - A gluten challenge and serious depression

Our daughter Su, 22, tried a 6 week gluten/dairy challenge after being off major forms of wheat for 8.5 years, the last 6 months strictly gluten free. The challenge was miserable, but her blood and biopsy tests were "stone cold negative”. During the challenge,  AND AFTER SHE RETURNED to a strictly gluten free diet excepting weekly communion loaf, she began to crash repeatedly into severe “black pit” depressions. This continued for over 3 months after she returned to a gluten free/casein (milk) free diet. During this time, she expressed that she may have experienced a breakdown, the experiences were horrible and awful and she might not ever be the same person. She refused to tell us all her symptoms ("Mom, you don't want to know!"). She was too ill to attend most of her summer college classes, to work at a hospital as planned or at one point to even get out of bed, and she avoided family gatherings that she normally enjoyed.  That fall her nursing school performance plummeted from honors grades to failing for the first time in her life. 

We suggested Su discontinue communion loaf but Su was not willing to give it up since her standard tests were negative.  This and several other situations indicated that Su was not thinking clearly. 

After we watched her struggle in 2nd year nursing school for 6 weeks we requested permission to provide a gluten free communion loaf for our church service and the elders cooperated. Her joy was obvious when we informed her of the church decision.  Several weeks after the loaf change, Su was able to describe to us how much better she felt and she unequivocally attributed her relief to the communion loaf change.  She paced her workload, remained vigilant with her diet and continued to stabilize.  However, four months after the communion loaf change, she baked cookies with wheat flour and although she did not eat the cookies, she crashed again. (Her abdominal pain and black pit depression reactions last about 2 weeks each.) Five months after that baking incident, she had another “gluten mistake” and, although she experienced severe abdominal pain for days, thankfully she did not crash into a depression.  She graduated college/nursing school Summa cum laude - 2 degrees) that spring.

Our family history on all four sides, both genes and symptoms, strongly indicate The gluten syndrome. My husband’s aunt is a diagnosed celiac, and my husband has been miserably chronically ill for 35 years.  Su and most of our 6 sons experienced digestive symptoms upon introduction of gluten in infancy. We withheld or delayed wheat ingestion for our babies but mistakenly reintroduced it later.  They experienced symptoms including severe constipation, knee pain, alopecia areata and ADHD/ADD in childhood including ADD/ADHD which we did not connect with the gluten syndrome.  Now in their early-late 20's they have symptoms including T-1 diabetes, knee and back problems, headaches, constipation, milk and egg intolerance and other digestive issues. Nevertheless, standard celiac test panels from recommended labs were negative for our entire family with the exception of a positive tTG from my husband.  Six months later, still on a gluten diet, his second tTG was negative.  Enterolab panels for the family were all positive.  We now know that the standard blood tests were not complete enough.  There are more antibodies to check in more places in the immune system.  Neuroimmunology Labs, Wisconsin, offers much more detailed panels but there are some gluten related antibodies for which there are no tests at present.

We conclude that Su requires a strict gluten free diet.  She does not meet current diagnosis criteria for the celiac disease subset of the gluten syndrome because villi are not always the place of damage. Obviously her brain and nervous system were affected by a strong reaction to the gluten challenge. She carries a double copy of the DQ 2 gene and her Enterolab antibody AGA-IGA test was positive. Enterolab tests are un-validated although the research is announced.  We learned from sad experience that when an accredited lab such as Enterolab finds elevated antibodies to  gluten grains, we must take them very seriously.

We also conclude that a gluten challenge, particularly since Su was previously gluten free for a long time, was a seriously unwise choice considering the small statistical chance ( 1 in 56 ) of a celiac subset diagnosis. (That was all we knew to test for at the time.)

We continue to study the gluten syndrome for clues to her and our family's health challenges, and continue to search for other relevant unknown factors.

Update: May 2007

Three years after Su's disastrous gluten challenge, Su is doing well.  She is a nurse.  She is still very very strictly gluten and dairy free, and avoids toxins and junk foods in general.

Update:  2008

Su got married this year.  The wedding receptions were gluten, soy, GMO* and casein free. 

Sueson Vess, owner of Special Eats (www.specialeats.com) 630-846-4605 and author of the excellent cookbook "Gluten and Dairy Free Cooking", oversaw the reception food. She did a marvelous job, despite numerous serious challenges.  Sueson is well known in the Chicago area as a professional chef and consultant for the food intolerant community.  Our family heartily recommends her services.  We also thank Andrew Brodell, The Casual Gourmet, Northbrook, IL. 817 530-9798,  abrodell@sbcglobal.net , who filled in for us 4 days before the wedding when another caterer without warning cancelled their services!! Andy's wife is newly diagnosed with celiac disease.  Andy was wonderful, kept the schedule, and baked a delicious wedding cake.    

* GMO - Genetically modified organism  For more information see www.seedsofdeception.com

Close:  Su's Story - A gluten challenge and serious depression

 

   Allison's Story - Genetics testing, and a gluten challenge

Hello All,

I have been meaning to write to this list for a long time about genetics and celiac disease and since there have been many questions lately referring to this topic, it is a good time to summarize what happened to my celiac daughter……Sorry that this is so long.

My daughter, Allison was diagnosed with celiac disease 8 years ago, when she was 5 years old, by both blood tests and endoscopic biopsy. At the time, the only celiac symptom she had, was that she basically had stopped growing. She was very tiny for her age. We were very lucky to have a knowledgeable endocrinologist that figured out that she had celiac disease right away and not some kind of growth disorder.

Fast forward 6 years……At the age of 11, Allison was still extremely tiny for her age. She was 2 years bone age delayed and was growing at a very slow rate. From what I have read, most kids who are small because of celiac disease, make up their growth deficiency after going on a gluten free diet. So, back to the pediatrician to discuss why Allison was still not growing. Our pediatrician sent us to a pediatric gastroenterologist Dr. to find out if there was something else going on with Allison in addition to the celiac disease.

Our new gastro Dr. first suggested that we start with blood work to make sure Allison had normal TTG and IGA and anti-endomysial antibodies. Just to make sure that we were doing well with her GF diet. We had blood work done by Prometheus Labs. At the same time, our new Gastro Dr. suggested that we also have Genetic testing done by Prometheus as well. So, we had all of these tests done. Her blood work came back perfect. One glitch however….Allison DID NOT have the genes for celiac disease. NO DQ2 and NO DQ 8. Wow, what a surprise. We wondered if we were wrong all along about her having celiac disease after all of this. So, just to make sure, we had the genetic testing done a second time. (I might add that this is $1500.00 each time. Our insurance does not cover this). No genetic markers for celiac disease showed up the second time either.

So, then what? I started researching the archives and wrote to Dr. Fasano and others about whether or not there was such thing as a person who DID have celiac disease, but DID NOT have the gene markers. Dr. Fasano wrote to me and told me that there was a very small percentage of people who might fall in to this category. My gastro Dr. (who by the way, went to Stanford) said that if Allison did not have the gene markers, that she DID NOT have celiac disease. She recommended that we put Allison back on wheat. I think somehow she thought that if Allison went back on wheat, that she might start gaining weight and grow.

Next, introducing wheat. So, we gave Allison bread or some kind of wheat every day. Remember, Allison never had any symptoms of celiac disease except for lack of growth.

Nothing happened. She didn’t get sick or vomit or diarrhea or anything. She ate churros and krispy cremes and all of the things she always wanted to try, since being diagnosed at 5 years old. When we started her on wheat, it was about Thanksgiving time. In March, we were on vacation and Allison vomited. Then, diarrhea. Then, migraine headaches and she got VERY, VERY, sick. Within a two weeks period of time, I think she lost 5 lbs. At age 11, she was now down to 48 lbs.

I called her gastro Dr. and she said that we needed to do her blood work immediately again to see what was going on. Well, as I’m sure you have guessed by now, Allison’s TTG levels were extremely high and her Dr. confirmed that she definitely DID have celiac disease after all. Her Dr. then did another biopsy just to make sure.

 

After Allison had her second biopsy and we put her back on the GF diet, her gastro dr. wanted to test her blood every three months to see if her TTG levels and IGA were back to normal.
 

It took OVER NINE MONTHS for her TTG to get back to the normal range.  That was really a surprise to me.  It took a very long time for her gut to heal and for her to feel better again just after eating wheat for 4
months.

So, since all of that, Allison is now back on a GF diet and healthy again. She is still VERY tiny. We just don’t know why. She has had every test known to mankind. We are just happy that she is healthy now.

In summary, I will say this. We now know that you definitely CAN HAVE celiac disease without having the genetic markers for it. Do not think that if you don’t have the genetic markers, you don’t have celiac disease. My daughter is living proof.

One other interesting thing that is discussed on this list quite a bit. It took 4 months of eating wheat before Allison showed ANY signs of being sick. So, it can take a long time for gluten to do damage in the intestine. It is not necessarily an immediate thing.

Have a great day,

Beth Kassis
El Dorado Hills, CA

 

Close:  Allison's Story - Genetics testing, and a gluten challenge

 

 Jennifer's daughter - GF diet success vs.a difficult doctor

 

Just wanted to say thank you for the 60+ replies I received. Most were diagnosed by biopsy but some just bloodwork and a GF diet.

Just to give you a background - as most of you know - my daughter who is 4 1/2 years old no was diagnosed at 18 months with cd.  She was diagnosed by bloodwork only.  When she was born she had a seizure disorder, low muscle
tone, and later had a speech delay.  She had been through TONS of bloodwork at two different hospital as well as MRI's, EEG's, and Cat Scans - all of which she needed to go under for.  So when she was 16 months she had a viral infection with diarrhea which lasted about 6 weeks.

We then brought her to a wonderful gastro doctor who ran a battery of tests and her TTG levels were elevated.  He suggested that we put her on a GF diet and retest her in 6 months.  So we did and her TTG levels were negative!  He was amazing and gave my husband and I an enormous amount
of credit for adhering to the diet.  She then started gain weight, speak more, her moods had greatly improved, her muscle tone had gotten slightly better, her stomach did not hurt anymore, she did not have diarrhea anymore, she did not zone out nearly as much and her energy level had changed enormously.

So we left her on a gluten free diet now for the past 3 years and she has made tremendous strides with her moods, energy levels and growth. 

On occasion she has had accidents and we see the differences it makes. 

So yesterday was her annual check up and her first gastro doctor had left the practice to become a nutrition doctor and referred us to another doctor there.  Well she came in and the first words out of her mouth were your child doesn't have celiac disease.  I was floored.  The first words out of her mouth for not even seeing my daughter was she didn't have it. She said "This genetic test result shows negative...so I pointed out that the genetic test was for my other daughter not the one she was seeing. Now I know that the golden rule is a biopsy (editor's note:  biopsy is only the golden rule for the villi damaged celaic disease subset of gluten sensitivity), but we, along as her original gastro doctor thought that a biopsy at this point in her life with all that **** she had been through was not necessary.  Her bloodwork as well as her tremendous response to the gf diet was good enough for all of us.   Plus the fact that when she does eat something with gluten in it, she has all classic signs of CD.  The doctor was very belligerant and spoke to me like I had no idea what I was talking about.  She said "Celiac Disease is a lifelong thing, an allergy to wheat is something she will grow out of."  Then proceeded to name every case she has seen and that she would show me charts and before long, she had my daughter all scheduled for the biopsy.

I was livid.  So I asked her if she has the disease or the allergy, what would I do differently?  She said nothing.  So whats the point then?  She has classic CD symptoms when she is glutened.  Her mental capacity is severly diminished - which I was under the impression was not due to an allergy.  I told her I would not be doing the biopsy.  I didn't feel the need to have her go under again for 2 biopsy's, one now and one in 6 months after her being gluten for all that time.  I did not want to put my daughter through 6 months of **** with stomach pains, diarrhea, mental instability etc.

Now I know that most of you are going to yell at me for not doing the biopsy, but at this point in her life, its just not something I want to put her through.  She has responded to the GF diet and I am okay with her being normal.  If she were to go through the process of eating gluten for the biopsy, I just don't think that is fair to her.  When she is glutened she complains to me that her tummy hurts and she feels funny - and when it finally gets out of her system, she says "oh mommy I feel so much better."

So thank you for letting me vent about a doctor who should learn a little more on bedside manners.  Oh and btw, when she finally examined her (we waited 2 hours in the waiting room) she looked in her nose and throat and told me I should have her tonsils and adenoids removed that she knew someone (a referral)!  I told her that we already have an ENT that we love and when she didn't know who they were (different hospital affiliation) she told me that they weren't good.

Thanks again
Jennifer
NJ

Close:  Jennifer's daughter-GF diet success vs. a difficult doctor