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Do You Feel Worse Before You Get Better?

MySonElliot

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MySonElliot Newbie
MySonElliot
Posted

Hello,

I have not been diagnosed as a celiac as of yet, however after being misdiagnosed for over 10 years (all the usual suspects), my new doctor suggested that I give a gluten-free diet a chance (he is a celiac and I guess he recognized the signs). I have a gastro appointment on June 6 (not too many gastro specialists in Puerto Rico) and have now been on a gluten-free diet since 5/19/2005. For the first few days, my symptoms went away and I started to feel better, not normal but better. These last couple of days, I've gotten bloated at night (but not like I was in the past) and during the day, I feel very lethargic and pretty sick. My celiac symptoms aren't as present, but I just feel worse physically. My wife is a dietitian, so I have been eating pretty well (after going to the health food store last weekend). Has this happened to anyone else? By this, I don't me a worsening of symptoms, but a general malaise and sick feeling when starting a gluten-free diet? Thanks!

PS- How do you get your topic Pinned so that it shows up on the first page of the forum? It seems pretty silly that it shows up on the 33rd page, after a thread that hasn't been commented on since January 2004.

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young5849 Newbie
young5849
Posted

I don't have a reply to the question. But to the postscript. The pinning happens after a moderator reads your post and confirms that it is appropriate. I found this out by checking the technical section.

MySonElliot Newbie
MySonElliot
Posted
  • Author

Thanks for the response to my pinning question!

KaitiUSA Enthusiast
KaitiUSA
Posted

I had ups and downs until I felt normal after about 5 months. After 3 months I was alot better but it took more to get me back to normal.

It really can take some time to feel better so I wouldn't expect to see a change so soon. Ups and downs can be normal for a while. Hang in there

As for the pinning question. When a moderator looks at it, we will determine if it is under the right section first and then we will move it to the proper section if it is not already and we will pin it there.

Bonnie Explorer
Bonnie
Posted

Hi,

I have been gluten-free for about 6 weeks. The first week I thought I was feeling a lot better but have gone downhill since then. Past two weeks been feeling rotten.

My bloating has also improved quite a lot. Still get a bit bloated at night but nothing like it was. Other than that though I am really tired, still having headaches, really bad pains at night in my legs and arms, nausea, chronic constipation etc. etc.

So don't feel alone! Hopefully we will start feeling better soon.

Hang in there! Its rather nice not looking 6 months pregnant if nothing else!

DEE BAERTSCH Newbie
DEE BAERTSCH
Posted

Apparently most people who are gluten intolerant are also lactose intolerant (my understanding is that once the villi are flattened you are not able to digest the cassein effectively). It's what made the difference for me. Also most celiac's are also vitamin d deficient which for me caused alot of muscle cramping and joint pain. Having the 25-hydroxyvitamin d2 & d3 serum tested is what is needed to determine if you are vitamin d deficient.

The other thing that takes alot of diligence is finding out the ingredients on everything you ingest to make sure you are not getting hidden gluten or lactose. The other thing that alot of celiac's cannot digest effectively is corn.

Good Luck! It's difficult to get a main stream doctor to help much with nutritional problems; I had the best luck with a natureopath.

  • 6 years later...
mushroom Proficient
mushroom
Posted

Pandora, please note that this is a very old post from 2005. The original poster no longer posts on the forum and is unlikely to see your post. You would be better off starting a new topic under doctors, like "Looking for a good celiac knowledgeable gastroenterologist in Puerto Rico"

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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

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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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