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I Guess I Should Be Tested...or?

Kottemamman

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Kottemamman Apprentice
Kottemamman
Posted

Hi guys,

just found my way here due to my doctor

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mftnchn Explorer
mftnchn
Posted

I am glad that your doctor is picking this up! Stay tuned here, there are a lot of people with similar experiences.

Sounds like the whole celiac blood panel wasn't done? Also some people have all negative blood work and positive biopsies.

Since you are still eating gluten and still managing ok it sounds like, if it was me, I'd go ahead and continue to eat gluten, make sure I have had all the blood tests, and also a biopsy. I'd make sure that these are done by people with good experience in this particular disease.

Then if it was me, even if those tests were negative, I would give the diet a six month trial (being very strict) to see if there was any signs of improvement.

I've learned a lot on this site, and you will too!

Guest j_mommy
Guest j_mommy
Posted

When I went in to see my GI the first time and she told me it could be celiac and explained what it was...I couldn't see the connection between what I ate and the disease either! After all that had been my way of life for as long as I remember. But then I started keeping a food journal and made notes on it about sypmtoms! Let me tell you there was a connection. The weekend before she called and said I tested positive I had a big stake of pancakes and the WHOLE next day I was alternating between bed and bathroom. and I realized the connection.

But I notice a huge improvment now that I'm gluten-free!!! I fell a TON better!

I would definetly get the celiac panel done...atleast then you'd know for sure!

Kottemamman Apprentice
Kottemamman
Posted
  • Author

Hi again,

no, the whole celiac panel was not done (I realize that now after reading a lot on this forum). And obviously my doctor does not trust it anyway, as he still suspects celiac disease. I am goign back to the doctor tomorrow morning, and then we

nora-n Rookie
nora-n
Posted

Hi

I am in Norway and hypothyroid too. Daughter has autoimmune thyroid problems too, both hypo and hyper. Her antibodies went down after trying gluten-free!

She has a diagnoisis now in spite of both negative biopsies and blood tests, but she did test positive to lactalbulmin antibodies (=milk) and she does not toerate even traces of milk or gluten. I react likewise but I did not manage to get a diagnosis. Different doctors.....

nora

norway

Nancym Enthusiast
Nancym
Posted

Most autoimmune diseases are connected to Celiac as well. There's a high percentage of people without total villious atrophy that will test negative to ttg and ema. And there's a high percentage of people that are negative on biopsy that do well on the diet. IMHO the diet should be tried regardless of testing and you should go on that result.

Kottemamman Apprentice
Kottemamman
Posted
  • Author

Hi all and thanks for answers and support!

Just came back from the doctor (the one who withdraw the B12 and zinc substitution). My B12 has sunk from 380 to 280 in two months and zinc from 22 to 14. So now he has sent me for the whole celiac panel and we will be getting those result next week. I am pretty happy despite the results, as I have been claiming for a month that my levels are lower (without having any blood test done).

I am very tempted to go glutenfree and give it a try EVEN if the results come back negative. I found an article in Medline that showed that about 1/3 of all celiacs without TOTAL villous atrophy do not have any antibodies. Some have only one type of antibody too, so I now understand it

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grey Explorer
grey
Posted

Hi,

I had a bad B12 deficiency for years that got progressively worse, even with supplementation by injection. When I was first tested for celiac four or five years ago, my ttg was negative - no antibodies, but very low B12. I was tested again this May, positive ttg and biopsy with total villous atrophy-definately Celiac! It's been there all along, I just had to get sicker to make it more visible.

(oh, and I never saw the connections with food either, until I was diagnosed and started paying attention, partly because everything hurts/reacts differently.)

Good luck, and I hope things work out for you.

grey

Hi all and thanks for answers and support!

Just came back from the doctor (the one who withdraw the B12 and zinc substitution). My B12 has sunk from 380 to 280 in two months and zinc from 22 to 14. So now he has sent me for the whole celiac panel and we will be getting those result next week. I am pretty happy despite the results, as I have been claiming for a month that my levels are lower (without having any blood test done).

I am very tempted to go glutenfree and give it a try EVEN if the results come back negative. I found an article in Medline that showed that about 1/3 of all celiacs without TOTAL villous atrophy do not have any antibodies. Some have only one type of antibody too, so I now understand it

Kottemamman Apprentice
Kottemamman
Posted
  • Author

I think I had better start a food diary while waiting on the lab results. Perhaps there is also a connection to my migraine?

Since I found my way here I realize that there are sooo many symptoms for celiac disease. I wonder if perhaps celiac is the answer to everything that Synthroid has not been able to solve.

So what do you think....?

* Hypothyreosis

*B12 deficiency

*Zinc deficiency (well, at least coming up when the effects of my previous 6 months substitution run out)

* Bad stomach (bloating, constipation, diarrhea, cramps, usually more painful than painless)

* Hair growing VERY slowly, about 0,5 cm/month ~0,2 inch/month (my hair dresser thinks this is very very slow compared to how much it used to grow in the past years. We are then talking about 1 inch/month)

*Migraine (seems to be connected also to B12, the lower the B12-the more migraine. At least I can see a connection here, true or false)

*Dizzy (Almost always, the world never stops spinning really...)

*Nausea (when my stomach goes really bad)

*Tired, not able to run/train as I used to.

*Muscle pain. Stiff muscles (regular patient at the chiropractor

grey Explorer
grey
Posted

Kottemamman,

I've been flat out told I was a hypochondriac by doctors, or just depressed. I would definately write EVERYTHING down. Food diary and everything else - even if it seems completely minor, because you are probably used to it.

I'm on a daily preventative for migraines, with a triptan for breakthroughs, and was already eating a trigger-avoidance diet (no caffeine, msg, most preservatives, most alcohol, chocolate). Still having many many migraines.

The B12 deficiecy and migraines + GI led my doctor to test me for celiac, and this time, definately positive.

I also had a lot of your other symptoms except the fractures & thyroid, but those are definitely common with celiacs. I also had a lot of nervous system symptoms connected to malabsorption of various things.

keep us posted - it sounds at least like you have a good md - and remember that celiac is multisystemic. So, chances are good that if you have it (and it sounds v. plausible) that it's not that you're a hypochondriac, but the disease is hitting you on many, many fronts at once.

Kottemamman Apprentice
Kottemamman
Posted
  • Author

Thanks Grey, it is really nice to know that there are other people with the same kind of symptoms...It kind of makes life a little bit easier to know that you are not alone! :-)

I do feel like a hypochondriac, but I also know realize that the chain of symptoms does make sense if you consider an auto-immune attack on the whole body. I am happy the blood samples I have left so far have supported it. The only problem right now is that my doctor thinks that the celiac blood samples will catch every celiac patient, and that you only need to confirm it with biopsies. I really need to take him out of this, as he is a very nice caring doctor (as we all know there aren

Kottemamman Apprentice
Kottemamman
Posted
  • Author

Seems I am on the right track! Just found out thru a relative that my mother (who I don

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
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