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mrssittingduck

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mrssittingduck Newbie
mrssittingduck
Posted

had problems with my son who is 6 and a half month old, he was classed as an hungrier baby taking feeds every hour and still screaming for more so by 3 month had weaned him onto food,

now since he was born he has had persistant loose stools yellow and runny and hardly put weight on, he was born at 7 pound and by the age of 5 month weighed only 8 pound 3 ... and stomach always bloated,the health visitor never came out to weigh him due to me having 4 other kids she couldnt cope with :o anyways he ended up in hospital due to a tragic accident he rolled over in his moses basket and suffocated, everything come back all clear and he is ok now thank goodness, but they began to question me about his weight, couldnt figure out why he was so small, they saw him feeding , kept me in for days , weighed him regularly and still no weight on, so satisfied i wasnt starving him eventually sent me home,

i found out a few weeks back celiac runs in the family and asked to get him tested for it, of which both doctor and health visitor refused to do the test as they had no reason believe he would have it.. in the end still no weight added on i looked around and found tests online, the tests are the ones that test for IGA and transglutamine blood test... his came up within a couple of minuits as positive, so have now managed to get the health visitor to listen, and she is getting into touch with different people,

after jasons test came as positive i tested myself which also came back as a positive...

dont know what happens from here but hope to learn more about it,

are their any chances of getting a false positive from this test does anybody know?? and if not can anybody tell me what shluld happen from here ? and any tips on living with it ?

thank you in advance ....

katie

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ShayFL Enthusiast
ShayFL
Posted

First, sorry that you have gone through all of this.

Make sure they run a complete celiac panel. If all else fails and you can afford to pay out of pocket, you can use a place called directlabs.com They email a req. form and you just have to go to a lab for the blood draw.

We are never hostage to doctors. You can get many tests all on your own by using places like directlab or Healthcheck or Life Extension. Never let them bully you or tell you no if you have deep intuition about something. If they refuse a test, check with directlabs and see if they have it and how much it costs.

I he improves soon.

Mtndog Collaborator
Mtndog
Posted

Hi Katie- I'm so sorry that you've been through so much! I hope your son feels better soon. Celiac is genetic so if it runs in your family, your son has it, and you tested positive, it's likely you DO have it (I was diagnosed by gene test and positive response to the diet; however, I think something like 33% of the population have one of the genes).

It's been awhile since I've done any testing, but from what I remember, you're more likely to test negative than positive. A positive test is a pretty strong sign. If you wanted, you could do the small intestine biopsy to see if you have any damage.

I also think a lot of women find that it can be triggered by body trauma like child birth too.

I really believe that if you try the diet and you feel better, that's your best indicator. There is a lot of GOOD information on this site and people with a lot of experience so WELCOME!!!!!!!!!!!!!

mrssittingduck Newbie
mrssittingduck
Posted
  • Author

thank you both of you,

my doctor isnt much cop which is why i brought a test myself.... basically my aunt rang up and said oh by the way have you had him tested for celiac as it is in the family, my aunts son was diagnosed with it at a few month old and her other son was diagnosed about 5 weeks back, her daughter has refused the test.... the health visitor and doctor both decided that their was no need toget him tested as they had no reason to suspect it could be that (even though its heredetary hmmmph) i ended up spending a fortune on the tests to get him tested and wasnt expecting it to come out positive but it did, i used theother test on myself which came out positive, so straight up the health visitors to see my regular one, wasnt their so left a message which she picked up a week ago and still hasnt got back to me about, i ended up seeing a different health visitor who looked at the tests and confirmed they both are positive, she has now put a refferal in to my gp, lets see what he has to say about it :o he has moaned at me twice already over me wanting the tests done,

is ok for them , its not them been treated like the worlds biggest criminal , it was proved accidental what happened to my son and i wasnt even their when it happened yet i get accused of all sorts grrr.. then they suddenly notice he weighs the same as a couple of week old baby after months of been born and months of me ringing the health visitor up to get her to weigh him as i knew something wasnt right ...

this health visitor has turned around and basically said you have done all you can, well done on doing it and going against what has been said and doing what you can for him... thing is, i shouldnt have had to, they should have sorted it before he got to that stage....i pointed it out when he was a few week old that he wasnt growing or gaining weight...

will make sure the doc does a complete celiac test thanks shay... and you are right about never held hostage by them, but think how many others dont know the tests are out their, i found out by pure accident looking up the word celiac when the doctor refused to test so i could find out exactly what it was.

what exactly is a small intestine biopsy? im assuming they take a pice of the intestine or something? going to have a read around the boards see what info i can pick up.... and well my trauma of childbirth wasnt exactly a trauma lol i have 5 living kids at the age of 24 ...and the longest labour lasted 6 minuits from start to finish :o lol

will give the diet a go see how i take too it, need find the gluton free stuff first though :o

thanks for the welcome :D

katie

RiceGuy Collaborator
RiceGuy
Posted

If I'm understanding correctly, you are outside the USA, yes? Please do be aware that gluten-free foods as defined by the European CODEX can have up to 200ppm gluten content. Many people find this level too high and react to it. Either way however, it is easier to stick to foods which are normally gluten-free, like veggies, fruits, legumes, nuts, seeds, etc, and prepare your meals from scratch rather than trying to replace breads and other baked goods with prepackaged gluten-free items.

As for the intestinal biopsy, yes, a sample of tissue is taken. The problem with this is that it is routinely falsely negative, because the intestinal damage is often spotty. Though the diet is the most definitive test, doctors do not like to rely on what they cannot examine under a microscope or other equipment. It's like simply telling the doctor we feel better while on a gluten-free diet is like saying "it's all in our heads" :angry: I've never ever heard of a false positive for Celiac either.

Anyway, I'm sure you've found the answer, and I hope you feel better soon!

Mtndog Collaborator
Mtndog
Posted
.... and well my trauma of childbirth wasnt exactly a trauma lol i have 5 living kids at the age of 24 ...and the longest labour lasted 6 minuits from start to finish :o lol

thanks for the welcome :D

katie

Omgosh- that's amazing- 6 minutes!!!!!!!!!!!! Sorry you had such a horrid experience with the health visitor in addition to everything that happened with your son.

And RiceGuy is right- watch out for the Codex products- 200 ppm is too much for many people. Luckily, in the last few years, gluten-free food (bread, snacks, etc) has REALLY improved taste and texture wise.

mrssittingduck Newbie
mrssittingduck
Posted
  • Author
Omgosh- that's amazing- 6 minutes!!!!!!!!!!!! Sorry you had such a horrid experience with the health visitor in addition to everything that happened with your son.

And RiceGuy is right- watch out for the Codex products- 200 ppm is too much for many people. Luckily, in the last few years, gluten-free food (bread, snacks, etc) has REALLY improved taste and texture wise.

thanks ,

health visitors really getting to me round here, but since a different health visitor said the test was positive i havnt heard a single thing from my usual one who was throwing the accusations around , even though she was suppost to have rang me about the test to sort out what will happen now .

and thanks to both of you, will keep my eyes out on the codex products, i am in united kingdom not the us so yes you are right :)

katie

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    • cristiana
      Feel like I’m starting over

      By cristiana · Posted

      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
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      By Wheatwacked · Posted

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
      My only proof

      By NanceK · Posted

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Feel like I’m starting over

      By Wheatwacked · Posted

      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
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