New Family

[mamazoocrew]

Greetings all, My 11 year old daughter and I have a long history of tummy upsets and have only recently began the testing process for Celiac disease ( the poor child having been put through every other test under the sun from the age of 2, we hope we're finally getting somewhere). Her new pediatritian had me take her to Children's Hospital San Diego where they drew a "comprehensive celiac panel" which was shipped to Promethius labs for analysis. We're desperate for answers and I'm wondering how accurate blood testing actually is? If the results are negative or inconclusive would it still be a good idea to try the gluten free diet?

My daughter has had tummy problems since the age of two when she was painfully thin with a bloated belly and had passed out on more than one occasion from abdominal cramping. She is still thin and often complains of a "tummyache" and sometimes doesn't want to go places away from home for fear her tummy will start hurting. We both get canker sores in our mouths and have frequent loose BM's. I also have the tummy upsets and have had low Ferritin levels and awful depression for the past year and a half with no reasonable explanation. I know being diagnosed with an illness is not a desirable thing, but we just need answers and I hope the blood work will give us something to go on.

Any advice would be appreciated.

Thank you all for your time!

[Adelle]

Hello and welcome! I'm not a parent, but I'm 22 and I'm goin with the gluten-free diet. I have been horribly ill for 6 years.... My bloodwork came back "borderline positive".

My advice is, try the diet! Screw the biopsy! I didn't get the biopsy, the diet has worked miracles for me, try it! You've got nothing to lose!

Oh ya, ask any question, no question is stupid. If u choose to follow the diet, be sure to check ur beauty products, get a new cutting board (cause gluten can hide there), I'm so glad u found this board, congrats!

[tarnalberry]

Celiac tests are fairly good for many people, but not great and not for everyone. I would suggest trying the diet even if the results aren't necessarily positive, as the dietary test is a valid test itself.

[CDFAMILY]

My youngest daughter was probably born Celiac. She had so many symptoms starting at birth. Many doctor appts and never any answers. I was the same and became very sick neurologically in 2003. First I found a B12 deficiency so I started the whole family on mega B12, vitamins and B complex. My youngest daughters explosive gas and burping suddenly calmed down as did my gas problems. I thought the B12 was going to be my miracle cure but I continued to decline. Finally someone directed me to the Celiac site and was tested and found positive.

I knew my daughter had this so I had her tested even though she was eating a low almost no gluten diet and taking mega vitamins. Her tests were negative and negative biopsy. She was still having many symptoms, RSD, bone pain, major fatigue, depression, anxiety, edema, etc.

I was not happy with her gastro as he refused to believe she could have this disease. He did test her HLA and found she had DQ2 and DQ1 before we quit going to him.

Our new primary doctor seemed more in tune with this disease and had her do a challenge. She became extremely anemic in just a few months and followed the results to a tee of the article below. Because of the article below and the positive response to the diet with the DQ2 gene he diagnosed her with Celiac Disease. Our primary doctor is ahead of most doctors in that he doesn't believe you need biopsies if there is enough proof that you have Celiac.

Open Original Shared Link

Am J Clin Pathol. 1982 Jan;77(1):82-6.

Related Articles, Links

Serum ferritin levels in celiac disease.

Souroujon M, Ashkenazi A, Lupo M, Levin S, Hegesh E.

Of the various common assayed parameters of iron metabolism, serum ferritin levels are the most discriminatory in distinguishing between non-treated celiac disease and other gastrointestinal disorders in the pediatric age group. Patients on normal diets usually have very low ferritin levels that increase at an average rate of 1 microgram/1/month when placed on a gluten-free diet. When the patient returns to a normal diet, however, ferritin levels decrease rapidly at an average rate of about 4 microgram/1/month. There is a relationship between abnormal intestinal changes and low ferritin levels in celiac disease with improvement in both when the patient is on a gluten-free diet. It is suggested that serial blood ferritin evaluations together with the leukocyte migration inhibition factor production assay should eliminate the need for invasive intestinal biopsies for the confirmation and possible follow-up to response to treatment.

PMID: 7055099 [PubMed - indexed for MEDLINE]

I think a major problem with doctors is that they are always waiting for the flags on blood work instead of looking at the whole picture. Another words, her ferritin and iron were always very low but not low enough to be flagged. Her TIBC was always high but since the ferritin was never flagged this was ignored. She also had low lymphocytes and many other flagged problems but nothing was ever questioned because one would rule out another.

When placed on a gluten free diet her numbers improved dramatically in 3 months although I still think her ferritin is still too low. Her TIBC was not tested so I am not sure if that dropped from her 527 count with 400 as high.

range gluten-free Challenge(eating gluten)

IRON 50-212 149 L22-

Saturation 16-35 37 vL4-

Ferritin 10-291 NL23 vL5-

D 25 Hydr 10.1-60 18.4LN

*she also had a positive T4 and high TSH

Also during the challenge all symptoms returned with severe anemia, brain fog, bone pain, depression, edema, gas and burping. On the diet all disappeared other than the anemia which is still a problem. We started prenatal vitamins and extra vitamin D which seem to help.

So, I guess what I am saying here is that you need to study your blood work, read and question until you get the answers you need to make an intelligent decision on your own health.

[Guest nini]

my daughter and I both had major symptoms (I'd had symptoms since birth and so did my daughter)... I was officially dx'ed Celiac when my daughter was 3, and her ped. GI refused to believe that she could have it, her blood work was negative, and we did not do biopsies. My blood work was so highly positive my Dr. said I absolutely had it and didn't need to confirm it with a biopsy.

My daughter's pediatrician agreed with me to try the diet and we had miraculous results with my daughter. Her dx is based on genetic predisposition (me) and positive dietary response.

In my humble opinion, positive dietary response is the most valid and best diagnostic tool. If all the other tests are inconclusive or "negative" which only means "not positive"... there is no reason to not try the diet. I personally don't recommend the biopsy because too often it misses damage because either the disease is in the early stages or the damage is patchy and they didn't take samples from the right areas. I've heard way too many stories of this happening, where the biopsies were negative time and again and the person kept getting sicker only to finally have a positive biopsy with TOTAL villous atrophy and many other autoimmune diseases along with it because of malabsorption.

[Amooliakin]

I also agree that if the diet works it works and you should use it. Especially since you and your daughter have been so sick. I suspec though that your blood tests will come out positive for Celiac. After that it is up to you if you want to do the extra step of the biopsy or not. In our case, my daughter was right at the begining of the disease. Her blood test was positive, but not very high numbers. We did the biopsy (it was really not such a big deal after all) and it also came back positive - though "mild".

What is good for me, having the biopsy and the blood tests to look at, is that I know I won't ever be tempted to let her off the diet once she gets better. I have heard that some people's symptoms improve and then they let some gluten into the diet and feel OK. But it is really NOT OK internally. In those cases, having a positive diagnosis would help you stay the course.

But if you find the diet works and you are convinced that you and your daughter have Celiac and you know you will be true to the diet, then go for it.

The one thing is that it won't be as easy to go back and have the biopsy at another time because the diet will have started working and you (hopefully) won't be able to get a positive without a horrible gluten challange.

Good luck either way

[mamazoocrew]

Thanks to all of you for your thoughts and advice. I have often had very good "instincts" or "gut feelings" but all this time of being ill and finding no solid test indicators has left me feeling like a nut case!!! In fact, I have been put on so many different antidepressants over the past year and a half and each one has caused my stomach to become more irritated and hasn't helped the depression. After all, it's often all in your head, right? My daughter was sent to a GI when she was hospilized @ two with dehydration and the fainting spells from the cramping and he blew us off and told us to take her off of dairy and put her on soy products (which she happens to be allergic to). Although we are still waiting for the blood work to come back, like many of you have stated, I'm going to go for the dietary change and see how it goes. What is there to lose by it, and if it works, I don't need an official diagnosis to be convinced. Thanks again to all and I'm sure I'll be around to get to know you all better. It's nice not to be alone in all this.

Kristy