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Do We All Have Different Degrees Of Sensitivity?

TGK112

By TGK112
in Coping with Celiac Disease

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TGK112 Contributor
TGK112
Posted

I have been gluten free for about 6 weeks now. I never had typical symptoms prior to going gluten free - except for osteoporosis and weight loss ( about 10 pounds in the past year). I eat out about 2 -3 times a week - and have been careful to explain to the servers that I am on a gluten free diet. I have never felt sick after eating out ( but I didn't feel sick prior to being gluten free) What I am wondering is - are some people more prone to issues with cross contamination than others?

I don't know if I am less sensitive to cross contamination or I just don't get that immediate reaction?

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GottaSki Mentor
GottaSki
Posted

Without specific reaction to gluten it is hard to know if you are consuming small amounts of gluten and whether these small amounts of gluten are causing damage.

I can tell you that you may still develop reactions - I became much more sensitive at about three months gluten-free and super sensitive by six months.

If you don't develop any reaction, your follow up testing becomes very important. Often the DGP IgA and IgG are the most specific to accidental gluten ingestion. My Celiac Doc suggested full celiac blood tests as follow up at 3 months, 6 months then annually thereafter.

Time will give you a better idea if you need to be more careful.

shadowicewolf Proficient
shadowicewolf
Posted

oh yes. Before going gluten free i had massive "D" and vomiting. When i "Cheated" I got major "C" (No fun), and now, whenever i get it, i retrace back to the last thing i ate.

Not to mention the brain fog (uuuuugh so bad for a college student with homework!), cramps, mild headaches, and major tiredness.

nvsmom Community Regular
nvsmom
Posted

I'm still pretty sensitive. I've been glutened twice by accident. Once was in a restaurant (still don't know what got me) and another was a gluten-free beer that was gluten-free to 3 parts per million. Both timesI was sure it was gluten. I have had two stomach issues that I think was not gluten related since it wasn't quite my typical reaction, although it was similar.

TGK112 Contributor
TGK112
Posted
  • Author

I guess what I am asking is more about internally. I realize that we all have different reactions - from none - in my case - to severe. What I'm wondering is - do we all have different degrees of internal damage? Does one person get inflamed by a speck of gluten, while it may take another person a slice of bread to get the same amount of inflammation?

mushroom Proficient
mushroom
Posted

Absolutely. Some celiacs with totally flattened villi can eat a slice of bread and not even notice it. For them,knowing they are conforming to the diet is very difficult because they don't know when they have been glutened. These are the so-called silent celiacs, often diagnosed by accident.

MistyRG Apprentice
MistyRG
Posted

I have said since I was diagnosed that I don't have the "normal" symptoms. I only had the rash that started this whole ordeal.

Now, 4 months into gluten free, my slip ups or unknown gluten is known immediately. I get a heavy, bloated feeling in my stomach, and it cramps up a little. It isn't bad, but it has progressively gotten worse with every exposure.

On one hand, I'm glad because I can tell when I am eating something that could be contaminated. But I am really shocked at how much I have changed from zero symptoms to noticeable in that short time!!!

And when I had zero symptoms, my biopsy came back with severe damage to my intestine. So even with no symptoms, we are doing damage.

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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? 
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      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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